FUNDING FOR PERSONS WITH DISABILITIES
HEAD INJURY ASSOCIATION OF LONDON AND DISTRICT
CONTENTS
Monday 27 January 1997
Funding for persons with disabilities
Family Vision Support Network
Ms Teresa Dale
Ms Valerie Wilson-Barry
Transportation Action Now
Mr Stephen Little
Head Injury Association of London and District
Dr Andrea Lazosky
Mr Gary Davies
Dr Patricia Spindel
Ontario Advocacy Coalition
Ms Mae Harman
Ms Ruth Stoddart
Ms Patti Bregman
Ms Jeannie Kippax
STANDING COMMITTEE ON SOCIAL DEVELOPMENT
Chair / Président: Mr Richard Patten (Ottawa Centre / -Centre L)
Vice-Chair / Vice-Président: Mr John Gerretsen (Kingston and The Islands / Kingston et Les Îles L)
Mr JackCarroll (Chatham-Kent PC)
Mr David S. Cooke (Windsor-Riverside ND)
Mr TomFroese (St Catharines-Brock PC)
Mr JohnGerretsen (Kingston and The Islands / Kingston et Les Îles L)
*Mr MichaelGravelle (Port Arthur L)
*Mrs HelenJohns (Huron PC)
Mr W. LeoJordan (Lanark-Renfrew PC)
Mr GerardKennedy (York South / -Sud L)
*Ms FrancesLankin (Beaches-Woodbine ND)
*Mrs JuliaMunro (Durham-York PC)
*Mr RichardPatten (Ottawa Centre / -Centre L)
*Mr TrevorPettit (Hamilton Mountain PC)
*Mr Peter L. Preston (Brant-Haldimand PC)
*Mr BruceSmith (Middlesex PC)
*In attendance /présents
Substitutions present /Membres remplaçants présents:
Mrs ElinorCaplan (Oriole L) for Mr Kennedy
Mr GaryFox (Prince Edward-Lennox-South Hastings /
Prince Edward-Lennox-Hastings-Sud PC) for Mr Froese
Mrs LynMcLeod (Fort William L) for Mr Gerretsen
Mr John L. Parker (York East / -Est PC) for Mr Carroll
Mr DerwynShea (High Park-Swansea PC) for Mr Jordan
Clerk / Greffière: Ms Tonia Grannum
Staff / Personnel: Mr Ted Glenn, research officer, Legislative Research Service
The committee met at 1542 in room 151.
FUNDING FOR PERSONS WITH DISABILITIES
Consideration of the designated matter pursuant to standing order 125 relating to the impact of the Conservative government's funding and funding cuts on persons with disabilities and their families.
The Chair (Mr Richard Patten): Ladies and gentlemen, seeing that we have a quorum we will resume hearings on standing order 125. I must apologize to our witnesses today. This House from time to time can be unpredictable and it often is.
FAMILY VISION SUPPORT NETWORK
The Chair: Today we have the Family Vision Support Network. You have half an hour to make a presentation. Welcome. The time between your presentation and half an hour is divided equally between the three parties to make comment or to ask questions of you and your presentation. Thank you for taking the time, and if you'd please proceed by naming who is present for Hansard purposes, we can proceed.
Ms Teresa Dale: My name is Teresa Dale. I'm a facilitator with the Family Vision Support Network in Durham region.
Ms Valerie Wilson-Barry: I'm Valerie Wilson-Barry. I'm a facilitator for the Dreamcatcher's family support group in Durham region.
Ms Dale: The issue we'd like to address today is the impact the cuts have had on families and recommendations regarding a funding format. That will be the last page of your handout, so I'll review that at the end.
A direct outcome of the cuts to people with disabilities can be witnessed in the Durham region. For the past four years, parents who have supported their disabled child at home have gathered together. They have done this because community agencies no longer have the resources available to help them in the care of their loved ones. They have no hope of day support, residential support or even the community programs at one time offered by those agencies. What makes this even worse is that special services at home and respite services, their only resources, are now threatened. A brief, Unkept Promises: Lives on Hold, which profiles their circumstances, is now in your hands. It has not been responded to by the present government.
Families with senior parents, families with children leaving school, families whose health or personal circumstances mean that they cannot support their disabled son or daughter at home have only the diminishing resources of special services at home and the respite services. These families, out of desperation and feeling like outsiders in the agencies they helped to build, have banded together in small family support networks to help each other attack the problem head-on. There are eight such groups in the Durham region, representing close to 100 families. A chronology outlining the effort put forth by these families on behalf of their disabled family member has been provided for you: four pages of meetings, proposals and presentations. Please ask yourselves why this has been necessary for the families who care for our disabled community members.
These family networks have created a unique support system for both themselves and their loved ones: one that involves them in tangible, practical and ongoing ways; one that offers safety and security to their family member and builds on community involvement; one that is cost-effective and has demonstrated outcomes for people beyond what was expected; one that is now threatened and has not received any funding, in fact has been cut since the Progressive Conservative Party took office.
Your package includes a second brief, Evidence Concerning the Use of Pressure Tactics and Strategic Inaction by Ministry of Community and Social Services Officials Against Parents of Children with Developmental Disabilities in Durham Region. This brief outlines deliberate attempts by the area office to block these families' requests for help while they carry out their cost-containment agenda -- caring, responsible, taxpaying families blocked by those paid with their tax dollars, supposedly for their help. The information contained in the brief was obtained through freedom of information requests at a personal expense of $150 to the families.
We are here today to ask this committee to listen to the struggles these families live with, the stress, the uncertainty and the worry. It is not their disabled family member who causes this stress but rather it is an underfunded, overbureaucratized system. The following three people are members of Family Vision. Their situations are not hypothetical. They are the situations as they exist for these families. They are representative of many families in our region.
Andrew, age 22, has cerebral palsy, a seizure disorder, and speaks in a few single words. He has periods of incontinence. At age 18 his parents applied for residential support through the ACL and were wait-listed. At this time he was in school full-time, had a full-time summer program when there was no school and received a maximum of 20 hours of special services at home. His parents found a young couple for Andrew to live with in 1994 and the ACL agreed to pay for this arrangement at $1,000 a month. He was still in school, so no day supports were needed. Special services at home does not transfer with him, but his parents provided the couple's respite by having Andrew home. That fall the ACL was hit with a 5% cut, and this was passed directly on to Andrew. His parents made up the $50 a month.
When school finished, so did Andrew's living arrangement. With nowhere to go during the day, the couple did not keep him as they both worked. He moved home and got back on special services. Despite the loss of school support, he still received only 20 hours a week. In an attempt to arrive at a reasonable solution, his family moved to a home with a large basement they hoped to finish for Andrew and have a live-in supporter.
In December they presented their plan to the special services program. The answer was that if they moved help into an apartment in their home, he would be cut from the program; if he moves in with someone else, he is cut from the program. Now without school and with only three hours a week of support from an ACL, he has special services at home, which was reduced in December by $500 a year.
Today Andrew's family is tired, frustrated and angry. They do all we ask of a parent and nothing makes sense. They are in limbo, with Andrew going part-time to another family and staying home five days a week so that they can maintain the minimal support provided by special services.
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Andrew needs to get on with his life, and all his family can do is go day to day wondering what will happen next. They cannot make plans or have any sense of a future for Andrew. They need your help. Andrew's mother shares his life, plans his activities, hires, supervises and pays his workers. She organizes countless meetings on his behalf, always under the constant fear that at any time all her effort will be in vain.
On top of this are her other duties as wife, mother of three other teens, part-time teacher, and caregiver of an ailing senior mother. The arrangement currently costs $21,000 a year and could be made permanent and full-time for an additional $18,000, which is far less than the equivalent cost of day supports and residential programs in a community agency.
Gary is aged 42. He is developmentally handicapped and has some problems with swallowing and his bowels. Gary lived in an institution from the age of six. As the closures happened, he was relocated to Durham Centre and then to MTACL. In that setting he was considered a behaviour problem and was placed in a specialized group home and day program.
As his frustration and difficulties grew, so did his family's concern. The closer he lived to them, the more they recognized his day-to-day struggles. Following the death of his father in 1992, they decided to bring him home. Gary lives with his sister Valerie, who is a single working woman. She bought a small home and built an addition for Gary. Many weekends he visits his mother in Scarborough, who is a senior. In the fall of 1993 she joined Family Vision to get the funding they need in order to properly support Gary in her home.
Valerie works 40 minutes from home and is under constant stress and worry about what is happening with her brother while she is at work. She calls home several times a day and has purchased a Protect Alert system for him. Gary does not have a day program, but Valerie has managed to get him some part-time work washing windows in the local businesses. The members of the small community of Hampton have been very welcoming.
Valerie receives the maximum special services at home of 20 hours a week and knows this will be reduced to 19 hours when she renews this month. This money gets spent long before she can reapply, even though she tries to stretch it. She is constantly involved in going to different agencies and funding sources to get additional support dollars, and still Gary is at risk.
Recently a neighbour dropped in to check on him and he was blue, having choked on a peanut butter sandwich. He has a lot of scars emotionally from his life in the facility which Valerie is trying to help him deal with.
The family knows they are providing what is best for him in so many ways, but not at this current level of funding. Valerie needs $30,000 annually to support her brother at home, probably about one third the cost of his previous arrangements. She cannot continue with the stress she is under, and Gary cannot continue to be left at risk.
Allison is 38 years old. She has Down syndrome and a severe seizure disorder. She does not read or write or look after any of her personal care. She wears a protective head mask because of the drop seizures she experiences. Her neurologist is constantly monitoring, adjusting and changing her medication, but to date no product has controlled her disorder and many have negatively affected her behaviour.
Allison's father, Doug, is 71 years old. Her mother is in her late 60s, with frail health. Allison has always lived with her parents and attends a day program of the ACL. In 1992 Doug applied for residential support to his ACL, where he has been a member for the past 30 years. He was worried about what would happen when he could no longer care for her at home. The answer, which shocked him, was a waiting list and dim prospects. Doug had some very serious health scares in 1994 and out of desperation has joined the Family Vision Support Network.
Doug began using special services at home five years ago and currently receives the maximum of 20 hours. Last year he was forced to appeal, an extremely stressful exercise for this family. He is forced to apply to other community sources for additional funding, and the constant stress of applying, waiting and wondering is having its toll on the family. Doug knows that this year he will be cut to 19 hours a week due to the policy of our area office to serve more families with the same resources, which in these cases weren't sufficient to begin with.
Doug would like to keep his daughter at home as long as he is able. He and his wife are seniors on fixed incomes, and despite this, they have taken the responsibility for their daughter and have arranged a discretionary trust to assist her when they are gone. They were hit this year with the changes to the drug program and have paid out $350 since July above the deductible for the three of them and understand they need to pay that deductible again beginning in April. Doug needs $15,000 a year annually to support Allison in his home. If he is not supported, Allison's care will fall to the system and it will cost a great deal more.
Allison's situation was brought to the attention of the Legislature last October, thanks to Gerard Kennedy. The Hansard dated October 22, 1996, is the second-last page in your package. Despite the promises made that day by Janet Ecker, Doug has not been contacted.
Ms Wilson-Barry: I'm here today to speak with you who are the representatives of the government in power with the mandate to support, protect and serve the citizens of Ontario. You have initiated these public hearings to give voice to people impacted by the decisions and actions taken by this government. I want you to hear at first hand the results and crisis that this government continues to create through chaos and the poor use of communication with those whom they deeply affect.
In Durham region we have experienced an incredible growth of people. It's partly due to the fact that we are the bedrooms of Metropolitan Toronto. Our funding has historically been lower than other areas across the province on a per person basis for those with developmental challenges. Despite this, we have managed to provide services to the best of our ability. These services have been created, fought for and monitored by dedicated persons, most of whom are family members of those whom these services were to have supported. This yoke has become a noose, with each struggle to inform our government only resulting in the tightening of the noose.
Over the past five years, and even more subtly the five years before that, the funding allotted to the agencies to support vocational rehabilitation, education and recreational needs has been insidiously reduced. Persons leaving sheltered workshops, schools and the institutions had the funding attached to them whittled away.
You said administrative cuts were not to affect front-line support, but they have. Community agencies are scraped to the skeleton now with closed-door policies due to your constraints. Dollars in the community have been stretched to the point that places the very people who need support and protection in less than safe environments, less than human conditions, and where they go for help and who they speak to, who knows?
You have a great deal of documentation from families concerned over their workshops, the future care of their children, from agencies which are unable to meet the new demands of individual needs and skeleton staff who are doing less than the job they could do if funding reflected the need.
Over the past five years I've been thinking a lot about what we have presented as supports for developmentally challenged people. I myself have been working in this field since 1971. I have seen institutions closed. I was in Orillia in 1974 when those first people were brought in homes and I've seen a lot of changes. I'm also seeing a lot of things that are happening that are starting to look like the same thing.
In 1974 the Ministry of Health gave over all supports and services for the developmentally handicapped to the Ministry of Community and Social Services. That was a good move. But there was a lot of fear in our community when there was discussion about these same people being returned to the Ministry of Health, which couldn't provide for them in the first place. Now we've got people who are living in communities who are suffering unbelievably and families that are really falling apart because of what's happening. We want to make the people who are making those decisions very aware of that.
In my evaluation, I think we've created a lot for the disabled, but over the last years this government has coldly and unabashedly shaken the very foundation of the people's lives. You are consciously choosing to continue on this path against people who are for the most part unable to fight back because they either don't understand or cannot communicate with you. Their advocates speak out and the government spokespeople have turned deaf ears, I'm sure because they don't expect retaliation or a fight from these vulnerable people.
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What we're doing now was done before. The Ministry of Health decided to shut down all psychiatric facilities and provide community-based support homes and services, yet we all know the number of ex-psychiatric patients who are living in the banes of poverty. Street people are now not only the problem of big cities, they are also living in towns and villages across Ontario. They die yearly from exposure, malnutrition and violence. They are despised by society at large, but they too are members of someone's family who believe that their loved ones would be well looked after after they pass away. Did we help these people to have what they need? Those people now, are we helping them? Yet this is the path you want people to follow as faithfully and as blindly as the people before us.
The families of Durham region collectively say, "No, no, no." We will fight as we have for the past few years in earnest to stop what is happening. We have followed government protocol only to be passed from pillar to post and told we were always speaking to the wrong people or that we were asking too much. We have created better options that are safer, more individually appropriate to each person, and those who have been able to receive help or hang on to the help they are receiving have had the best outcomes we have ever experienced in Ontario.
It hasn't been done with the cooperation of this government. It has been done in spite of it. The family support groups are demonstrating their successes to others in creating a fire of determination for other families. Family support groups are initiating action, following through and eventually being heard. Today is an example.
If across Ontario people were lying down and accepting the new directions of this government, you wouldn't have had to have a public hearing into the impacts your cuts are having on disabled persons. Beware. Everyone knows someone who is disabled, be they ill, physically challenged, developmentally challenged, very young, at risk or struggling in a school system that's unresponsive, or those who are elderly. You will hear more and more from your constituents. They're your voters.
We have followed the directions from every level of government to address our concerns. These are not new and, shamefully, they have not been addressed. Thousands of letters from Durham region have not been responded to by the area office, the minister's constituency office or developmental services.
The only response we see is in interest by the opposition members. Why is this? You have a responsibility that is being ignored. Meetings where we have shown and proven a better way of supporting people have resulted in the word that your restructuring document is already signed, sealed and delivered. When this government first came into power, we were told we would be consulted. No one who has seen any part of this document has seen any of the recommendations or any of the ideas to allude to any other kind of consideration to what else is happening.
From our understanding, none of the initiatives were even considered. Promises to come and see what we've been doing were unkept. You wonder why such briefs as those passed to you have been written. Every family and every group is open to have you come and see and judge which is the healthiest, the least intrusive, a better bang for your buck and the most successful.
At this point, I want to tell you all that addressing the most in need will create another population and a greater population of most in need. Prices since this government has come into power have increased because the generations with aging parents and younger children will continue to come to you. There's nothing in their community that they can access.
Family breakdown is at an all-time high. You are threatening the removal of the very supports, including, as I say, age, that hava made it possible for families to keep their loved ones at home. Why? If it takes a family $10,000 to meet their son's or daughter's needs, are you saying they must step back and let someone else have that money because they are more in need?
An analogy I'd like you to think about is this: Water can come in many colours and the colour of a water could stand for a certain support or a certain need, but water is water. It's not oil, it's not gasoline and it can't be substituted for water. Disabilities are just that. You take away, say, the blue water representing transportation aids, and you end up with people who can't seek adequate employment, can't get to work, can't earn a living, can't participate in their community, can't seek adequate health monitoring, can't live in their own family homes, can't feed their spirits because they're so isolated. What you end up with is an unhealthy person with lost or limited life skills, living at risk of abuse, neglect and abandonment. What a price to pay. Strip someone of their dignity.
The developmentally challenged will always require support to some degree. Do you give it to them as soon as possible, always building on independence and self-esteem with the person, or do you wait until the family is broken or unable to cope due to health or aging and then begin? No, you stop the insanity now.
Families and people are proud. They don't ask for any more than they absolutely require. Families' self-respect and knowledge prevent anyone asking for more than they need. They have felt at first hand what others go through in trying every way possible to help. They do not want your government to take responsibility for the disabled. No one wants to give up their son or daughter. No brother or sister wants to see a brother or sister institutionalized because of the lack of services that would support that person at home. We have solutions, cost-effective solutions, people willing to work hard, to help, to meet with those whom you choose to help set this up. What are you willing to do? We see no restructuring in your government. You're certainly working on it in the communities with the agencies.
In summary to this, I would like to say the families are being forced by you into the public arena and we're getting sympathy and response. In the government arena we are ignored. We waste our time and our energy and there are no results.
There's one person I would like to talk about, as Teresa has talked about two individuals. His name is Ryan. Ryan was born with a very rare type of neurological disorder called communicating hydrocephalus which has resulted in disabilities, both physical and developmental. He requires 24-hour support and needs help with everyday activities. Ryan requires high support for his personal care. He is ambulatory, but walks with an awkward gait. He has perceptual handicaps which limit his hand control and disturb his visual depth and cause him to be unsteady on his feet, so he does fall easily. Running is awkward.
To meet Ryan, he is so sensitive and such a happy person. He feels situations very deeply and he has a wonderful disposition and enjoys people. He is a delight to be with. In reviewing Ryan's input over the past five years at high school, he has learned virtually nothing. He's in his last year now, and his teacher tells us there are behaviour problems because he is bored. He's bored because he's been doing the same program for five years now with the same teacher. There's no plan or evaluation of what Ryan will do as far as employment past school. The association is full. That's not an appropriate place for Ryan anyway.
We looked at Ryan's needs. We have him assessed for a visual and OT assessment. Ryan's speech has just recently blossomed. He's using incredibly complex words for Ryan. He's making himself understood. He's initiating conversations with people, jumps in with his own opinions, asks questions now which he wasn't doing before. The assessment showed he needs daily, ongoing OT and speech therapy. He's on a very strong learning curve and now is the time to address it.
We have been everywhere looking for money and there isn't any. We were able to locate the assessment through the use of a personal health plan, but that's assessment and that's monitoring.
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Ryan's family also suffered two years of a very personal crisis in that they were left without a father. All three of Ryan's other siblings have gone through hell on earth, as has Ryan. His mother is stretched to the limit. She feels she cannot do any more than she is doing. Her other children are continuing to suffer.
In making this presentation, I said that I was going to point out that one more deterioration in any of her children was going to push her to a point where she had to make a decision -- and right now, she's on medical support. That's the last thing she wants, but she's been asking for help for two years now. She's in crisis, her four children are in crisis, and she gets no response from this government. She tries very hard within the family support groups to help other people, to be there for people. It's very simple: She needs individualized funding and that's what she's hanging on for, individualized funding so she can direct for Ryan, with Ryan, supports that he needs. She also wants you to know that she is one of a very large population of people who are in the same boat. What are we going to do about it?
These recommendations Teresa and I put together so that they would finish off our presentation.
Ms Dale: We'd like the committee to consider the following recommendations: Restore the funds to the developmental services budget which have been eroded at the expense of these families over the past four years; with these funds create a family-directed, individual funding system based on equitable supports to families who care for their children in the community, up to a maximum of the equivalent to community placement; design this family-directed funding system to be annualized so that it allows for long-term planning; tie the funding system to an existing support system, do not create a new bureaucracy; an expansion of special services at home for adults which allows more flexible use and greater funding capacity or prorating the annual support on a monthly basis, which could be sent out as part of a person's FBA, as is currently being done in Alberta.
The Chair: Thank you very much. We only have about a minute and a half, so let me ask you if there is something you'd like to add. We don't have enough time to have each party ask questions, but perhaps you'd like to underline a point that you've made in your presentation or elaborate for another 90 seconds.
Ms Dale: I think I'd like to make a point of saying that about 10% of the families who are presently in our community are the families who never did get into the supports the community agencies have, and those supports seem cut off to them right now. They are not being adequately served by special services at home because of the funding limitation and the limitation on how it can be used. We would really ask the province to consider a system of funding that is tied directly to people with disabilities that can be directed by their families or their support networks and can be used to purchase the services that are required on a very individual basis.
The Chair: Thank you very much for your presentation; very thoughtful. We appreciate your taking the time to put that together. If there are questions that members have, we'll be in touch with you.
Mrs Lyn McLeod (Fort William): Just a point for the record, Mr Chairman: The detailed background documents will be a matter of record for the committee?
The Chair: Yes.
TRANSPORTATION ACTION NOW
The Chair: Our next group is Transportation Action Now Inc, Mr Little. Welcome. You know our procedure. You have half an hour, and any time between your presentation and the half-hour is divided up equally, if we have time, for questions or comments. Please proceed.
Mr Stephen Little: I wish to thank the standing committee for the opportunity to come and present this situation to you and speak to you about the difficulties faced by seniors and persons with disabilities in accessing specialized transportation services at this time.
Transportation Action Now, or TAN, is a coalition of over 100 organizations in Ontario promoting accessible transportation. I am the chairperson of that particular organization.
It may be a truism to say that accessible transportation underlies all aspects of full participation in the life of our communities, but we in the disabled community are still hearing municipal politicians argue that accessible transportation is a charity or frill or special program and therefore should not be a responsibility of government.
Unfortunately, the Ontario Human Rights Commission has never had the opportunity to rule on the status of paratransit services, so we have no legal basis for claiming accessible transportation as a right. Nor has this government honoured its commitment to enter into negotiations for an Ontarians with Disabilities Act, ODA, which might have established our claim to publicly funded transportation services comparable to those provided to the able-bodied public. We expect to sponsor a charter challenge in the near future to determine if transportation is a right, and also whether people with disabilities are entitled under law to some form of accessible transportation.
Our organization is very concerned with the future implications for paratransit of delegating transit services to municipalities. Transit service is not like water or sewer services, which are discretionary. Public transit serves all who do not own or drive a car, not just in my town or yours but throughout the province, and even people who visit from other provinces or other countries.
We find it significant that Mr Palladini did not see fit to mention people with disabilities, paratransit services or the concept of accessibility once in his news release of January 15. For the Minister of Transportation, the needs and concerns of 10% of the population are not considered worth addressing.
If the province vacates the field of public transportation, we are doomed to a patchwork of municipal services with no consistency or standards. The province may try to set policy, but without funding clout it will be a meaningless exercise, as I'll refer to later on.
In terms of reciprocity, not only do public transit services cater to residents, but in the past they've served visitors from out of town, out of province or in some cases even out of the country and from abroad. However, in the past year, many paratransit services in cities and towns throughout Ontario have cancelled their commitment to carry visitors from another jurisdiction. For example, Wheel-Trans here in Metro Toronto had a reciprocal agreement with the surrounding regional municipalities in the GTA to carry their clients into Metro. This commitment has now been cancelled. This means that people with disabilities from Peel cannot travel to Metro for any reason whatsoever, whether it's hospitals, schools, jobs or visiting -- you know, social life.
At Transportation Action Now we get telephone calls from all over the world asking about our transit systems here in Ontario and how visitors can access them. A recent resident from Florida who uses a wheelchair wanted to visit Toronto for a week but was told he could not use Wheel-Trans unless he went through a registration process which would take upwards of two weeks to complete. TAN recommended that he rent an accessible van in Buffalo.
Nor is the TTC the only culprit. We know that many municipalities have instituted this restriction on service. Getting information about what is going on is difficult. The Ontario Urban Transit Association is preparing a report, but we have been waiting six months for it to appear. We also fear that some service restrictions will be hidden from the general public.
Before the province decided to withdraw its support for paratransit services, there was some degree of consistency in who was eligible. Although the province insisted that its criterion of "ability to walk up or down three steps or walk 175 metres" was a guideline only, municipalities generally accepted this as a standard. Now the province has disowned this guideline, and the result is chaos.
Already we are observing the discrepancies in who can or cannot access paratransit services in Ontario. Metro has agreed with the TTC that ambulatory disabled persons, mostly seniors, can be cut off. This has led to over 5,000 people, including people with strokes, polio, arthritis, kidney failure and arthritis, being disfranchised in Metro. Other communities are developing criteria for who is eligible and who is not.
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The province has stated that it will continue to be involved in safety standards, but people with disabilities are doubtful. We simply observe what has been happening with safety standards related to the trucking industry to feel deep concern about the nature of this commitment.
We also feel abandoned by the province because there are no longer to be any provincial subsidies for either capital or operating expenditures for paratransit services. This has always been seen as one way that the province ensured that paratransit services were provided and that the municipalities kept their end of the bargain. Without provincial funding support, there is nothing to prevent a municipality from downgrading or eliminating a paratransit service altogether.
The province also promised to subsidize only low-floor, accessible buses in future when new vehicles were purchased by municipalities. This was a very effective lever to force municipalities to increase accessibility for all its citizens. Now that incentive is also gone. The TTC has led the way in avoiding its commitment by purchasing 135 lift-equipped buses, which are unsafe, inefficient and out of date. Quite frankly, they just don't work.
The province created a grant program also to assist taxi companies to convert standard vans to accessible taxis, a very expensive operation but one which provides greater flexibility and cheaper rides. Now this grant program is also gone and there is no longer any incentive to provide accessible taxis in Ontario municipalities.
I referred to the issue of parking before, and although the issue of parking for persons with a disabled persons parking permit is not strictly a transit problem, it illustrates what happens when municipalities are left to deal with a transportation problem. Since the province introduced the special parking permit in the early 1980s, each municipality has developed its own parking rules. Thus, drivers using the card never know the parking regulations if they visit a town outside their own.
The province was attempting to develop a standard bylaw which would make it clear to drivers what the rules are throughout Ontario, but the municipalities have not been able to agree on the terms of this bylaw. So disabled drivers with permits are hounded by police for illegal parking and our organization gets calls on this on a very regular basis.
The province owes it to the citizens of Ontario not to withdraw from intermunicipal transit planning, coordination and integration, particularly for paratransit users, who usually have no other transportation options. Ordinary people are being treated unfairly, and it is likely to get worse. Moving people is not like providing water or sewer services. It requires more planning and greater flexibility. Our organization lives in hope, but we remain sceptical that this issue will be addressed.
The Chair: Thank you very much, Mr Little. We will begin today with the Liberal Party, Mrs McLeod.
Mrs McLeod: Thank you very much for your presentation and for being here. I can appreciate your scepticism, because it seems to me you've been raising these issues over and over again without very much response. I suspect that you would be rather sceptical as well of the province's claims that they can maintain standards in program areas where they are getting out of funding. Certainly that is true in transportation.
Mr Little: Funding seems to be a lever that has to be reckoned with and we're not at all optimistic that standards or guidelines will be respected by municipalities that have to deal with ever-tightening budgets. They will make choices based on the needs of their local citizenry and, as a result, you will have a patchwork of inequity, if you will, particularly where municipalities abut each other. For all intents and purposes, we keep talking about a GTA, but it's going to be made up of several municipalities. Megacity or not, they are still going to be separate jurisdictions that are going to deal with the issues the way they feel is appropriate and it will not have consistency from one area to the other.
Mrs McLeod: As you point out, it's been very difficult to get the issue of disabled transportation into a high priority area under past funding arrangements. Now with municipalities having to also try and find dollars for long-term care and child care and to fund the entire social housing portfolio as well as sewer and water and roads, it's going to be that much more difficult for disabled transportation to have a place on the agenda.
When you outlined the loss of standards that accompanies the loss of provincial subsidies and grants that the province used in order to back up its standards, are all of those changes in subsidies and grant programs that you've outlined the result of what we call the mega-week announcements? Was that all part of that? Some of those occurred even before then, did they?
Mr Little: Yes. There have been pressures on the Ministry of Transportation over the years to meet certain budget objectives, and when you're faced with the issue of repairing a bridge or providing an accessible vehicle or at least a funding program for an accessible vehicle, these are difficult choices, and I certainly don't blame the program managers. They're simply following through in very difficult circumstances.
But the fact remains that transportation issues for persons with disabilities constantly get pushed to the back of the agenda because it would seem there is either not a constituency out there that can raise a big enough fuss to get the attention and the profile it needs or, more recently, those people who do raise it are dismissed as special -- I even forget what the term is.
Mrs McLeod: Special interest groups?
Mr Little: Yes, special interest groups. Therefore, the arguments just get discounted by that much, having that label attached to you.
There is going to come a point when, with the changing demographics, there is going to be a shift from an able-bodied population to the fact that 10% of the population and more is going to grow into a significant proportion and there are going to be huge, huge implications because they cannot access public transportation services.
If we had to redo the clock and take us back to 1950, the subways that are being built would be built with accessibility in mind. It's far more complicated to renovate after the fact than it is while you're doing it, but unfortunately, and most recently illustrated by the Scarborough rapid transit decision, they just said, "What's the point in building an accessible feature when it links into an inaccessible rest of the network?" Therefore they just, as we often say, gave us the shaft: "No elevator, but the shaft is there."
Mrs McLeod: I apologize for not having realized that there were specific provincial grant and subsidy programs that had been discontinued prior to the mega-week shift, and I guess I'm struck by it because we've raised the issue of transportation for the disabled repeatedly in the Legislature. The answer we've consistently had back is that there have been no cuts to the disabled, that any cuts to disabled transit were made by Metropolitan Toronto or by other municipal jurisdictions, but these were specific provincial grant and subsidy programs that were cut.
Mr Little: Yes. What I was referring to in particular was the accessible taxi program. That was not a transit service per se but was more a program designed to supplement and create a greater variety of accessible vehicles serving the public in need.
Some municipalities have actually embraced the concept of accessible taxies; other municipalities are a little leery of them because there are safety issues associated with poor maintenance. In fact, some of the operators are reluctant to get into having an accessible vehicle or a series of accessible vehicles because the general public has a perception that, "Oh, that's just for persons with disabilities," and they don't realize that it offers them phenomenal leg room, but there's the stigma of having that wheelchair symbol on the side. So that particular program was meant to supplement the arsenal, if you will, that municipalities could use to address the issue of paratransit for persons with disabilities.
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Ms Frances Lankin (Beaches-Woodbine): I'm surprised to hear that as well. I didn't know that program had been eliminated. I did notice, however, that the program that was in place -- I think it was a $3-million fund -- to fund accessible entries into buildings was done away with and reannounced as a $1.5-million fund as if this was new money, but it's actually a program cut. It's kind of hard to keep up with the smoke-and-mirrors game that's been going on.
I was interested in your comment about the fact that with the provincial government no longer participating in any subsidization of municipal transit, in particular just for a moment talking about the capital side, they lose a lever to influence the type of vehicles, for example, that are purchased and the accessibility of those vehicles.
I think this is a huge lost opportunity when we have had in the last number of years a policy in place, because the province was paying 75% of the cost of purchase of buses, that as the Orion VI became available, the new bus came on the market with the low floor, that that would have to be what the municipalities purchased. In fact, it also helps build a bus industry which is now selling accessible buses around the world and yet not in our own jurisdiction because we're changing the rules. So I find that extraordinary.
Do you know why the TTC has been so obstinate in this approach and why they've gone to the lift vehicles?
Mr Little: They haven't confided in me with their deepest thoughts on the issue, but it would seem from what I can understand that there was an urgent need to replace a significant number of buses in the fleet. I'll give credit to the TTC: They did recognize that the issue of accessibility was one that was going to really bite them if they just went and bought regular fleet buses. So they entered into an exception kind of agreement, if you will, under this policy and were given permission to buy 135 lift-equipped buses, knowing that it was not ideal but recognizing that their aging fleet did need some replacement.
Much as we had predicted, the lift-equipped buses are fraught with problems, particularly in the wintertime, and as a result, even the bus drivers themselves are reluctant to use the lifts. At this particular point there hasn't been overwhelming demand on the part of persons with disabilities or seniors simply because of the negative reaction they get from the bus driver through to the passengers when the lift breaks down or it takes a little extra time or whatever. So there's a lot of negative stigma associated with trying to exercise your rights of being able to access public transit. But it clearly is a huge mistake and one that is going to take a little longer to be rectified, given the fact that they've sunk so much money into the 135 lift-equipped buses.
Ms Lankin: At this point in time the government seems intent on proceeding to download all of the transportation costs on to municipalities, along with a number of other things, as you heard last week. I was interested that the Minister of Community and Social Services told us that the provision of child care services by municipalities will be mandatory, but she doesn't quite have a definition of that yet and we'll wait to see the fine print when it comes out.
But it strikes me that the provision of paratransit should also be made mandatory. In the last round of budget cuts -- and we know the whole débâcle in Metro where Mr Palladini cut the money to Wheel-Trans and then said, "No, you can restore it," but didn't force it -- there was no mechanism that the province forced to have a certain proportion of the funding go to paratransit.
Now that they're devolving all of the responsibility, is it not incumbent on them to ensure that there are paratransit services of some sort and to set some provincial standard which they make mandatory, like they say they're going to do for child care?
Mr Little: That's what we will be recommending when we're given an opportunity to come and comment on all the bills associated with the megacity announcements. But indeed you're right. If you're going to download a service or offload a service, then the concept of a service usable by all should be inherent in it, and when I say usable by all, that obviously includes persons with disabilities and seniors with mobility impairments.
The issue that will come back up is, well, it's going to cost a fortune to do this and therefore we'll have to go on an extremely long track in order to meet an objective. I think the disabled community is cognizant of this fact, but the bottom line remains: Let's get on the track and let's start doing it; let's commit to a plan. As an aside, the effort behind the Ontarians with Disabilities Act would in fact do that. It would lay out a timetable to say let's try to move things through. It's not going to be done overnight, but at least if you have a commitment and an obligation to follow through on the track --
Ms Lankin: Where does the government's commitment on that bill stand? What have you heard lately?
Mr Little: We don't know.
The Chair: Sorry, Ms Lankin; your time's up. Mr Pettit.
Mr Trevor Pettit (Hamilton Mountain): Thank you very much for your presentation. I think it was either last August or September that Minister Palladini introduced CTAP, the community transportation action plan. Are you familiar with that plan?
Mr Little: Yes, we are. We are applying for funding under CTAP.
Mr Pettit: Do you support it?
Mr Little: We see it as a step towards resolving the transportation issues that impact on many elements of a given community, yes.
Mr Pettit: Do you think CTAP will improve accessibility or rideability?
Mr Little: The actual process that CTAP is going to create or set in motion is unproven at this point. I mean, we're at the very early stages of it. But the theory is that it would at least recognize all of the issues associated with transportation within communities and come up with a plan to maximize those resources that exist within a community to address transportation issues. That's my understanding of it anyway.
Mr Pettit: I'm also told, and maybe the Chair might back this up, that in Ottawa-Carleton they saved in the neighbourhood of $1 million over four years by contracting out a lot of their specialized transit. Do you feel there is room for greater efficiency within the municipalities?
Mr Little: Yes, we do.
Mr Derwyn Shea (High Park-Swansea): I appreciated your presentation today and I was conscious of your comment about the Ontarians with Disabilities Act and the discussions that had been made even before the last provincial election. I know it is an intention of the minister to proceed with that during this term, as promised in the election. The first objective was to deal with the equal opportunity plan, and then with the initiative for vulnerable adults. Now I think the answer is to move towards an ODA within the economic goalposts of the province.
In that regard, I'd like to turn your attention to some of the aspects of your presentation. Let me set aside the Orion, because I know my colleague Mr Smith would like to ask some questions, but particularly in the area of reciprocity, you raise an interesting question here about the ability of individuals from across the province -- from across North America, in fact -- to visit Metropolitan Toronto and feel able to access the Wheel-Trans program. Do I understand that to be taken as you saying that no matter where you come from, you should be able to access the services? And if that is true, how could a municipality, or a province for that matter, give some kind of reasonable planning to anticipate what the demand might be?
Mr Little: I think one would have to perhaps study some other jurisdictions where they have reciprocity. It would be a greater planning problem to try to anticipate those people from outside a normal community. In other words, I'm not talking Mississauga to downtown Metropolitan Toronto; I'm talking about people coming in from overseas or up from the States.
Mr Shea: Or from Florida or somewhere visiting here for a week or two and they'd like to use Wheel-Trans?
Mr Little: Yes, bearing in mind that what is currently done for the disabled parking permit is that the province has entered into agreements with other state jurisdictions to have, let's say, a disabled parking permit from Florida recognized as valid in Toronto with all of the appropriate privileges that are granted in the Toronto area. The same applies if I were to visit Florida: My disabled parking permit would allow me to park in those designated spots.
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Mr Shea: I understand that with parking permits. I think there's some rationale there.
Mr Little: It's harder to track with people coming in from outside, let's say, coming in from Florida, to use that example again. The visitors, I don't think, number in the tens of thousands or anything like that. We're only talking maybe a couple of hundred potential visitors from Florida who might come up and actually need the services of the paratransit system. From our perspective, first of all if the public system is accessible, then there is less need for a parallel transit system.
That issue aside, if the paratransit system is able to offer a variety of vehicles to address needs, such as an accessible taxi, such as Orion and whatever else may be going, then the request should be able to be met by somebody simply phoning up and saying: "I'm a visitor from Florida. I'm entitled to a service in Florida, and here's the information you need." I would suggest that these out-of-town visitors be given the benefit of the doubt and the opportunity to enjoy whatever the city has to offer.
We're really more concerned with the issue of somebody from Markham wanting to live in Markham who has a job in downtown Toronto. Ideally we would like to get them to the GO train so they could then hop the GO train and forget an hour and a half of sitting in the traffic. At this end, down at Union Station, they would then be able to hop a local feeder or service to take them to University and King, for instance, or go through the tunnel or something. That's the ideal we would like to see.
As happens in a lot of cases, if you want to go to the Scarborough Town Centre, which isn't on a GO train line, from Markham you're stuck with making arrangements with two service providers and you get dropped at a mall somewhere or a prearranged meeting spot. If one service is running behind or the other one ahead, you could be stranded there, and this gets enormously complicated once the mall closes or where these convenient drop-off spots are. As a result, you just don't have the ability to go from one jurisdiction to another, and that's just not a situation that is there for other people.
Mr Shea: The service on demand --
The Chair: Mr Shea, I'm sorry. Time is up. Mr Little, thank you for your very thoughtful presentation.
Mrs McLeod: Mr Chair, a point of information for the committee: Mr Little indicated that their organization had applied for funding from the government for the program that Mr Pettit referred to, the community transportation action plan. I was looking through the background material we have as a committee and I don't find a reference to any provincial funding for that particular program. I wonder if we might be able to determine whether there is funding and whether that funding has now been shifted to the municipalities as their responsibility, along with the other transportation shifts.
The Chair: We'll ask our researcher to look into that.
HEAD INJURY ASSOCIATION OF LONDON AND DISTRICT
The Chair: We now have the Head Injury Association of London and District. Would you please come forward. Welcome to the hearings this afternoon. Thank you for coming all the way from London. That's London, Ontario, I take it.
Mr Gary Davies: Yes, it is.
The Chair: I guess you know the procedure. Please announce your names and proceed. Thank you.
Dr Andrea Lazosky: I am Dr Andrea Lazosky and I am the president of the Head Injury Association of London and District.
Mr Davies: I'm Gary Davies. I'm the executive director of the association.
Dr Lazosky: Just to preface, you'll notice that we're from one area in Ontario, southwestern Ontario, so some of our recommendations at the end will be specific to initiatives happening in the London region. I think those things could serve as models for application in other regions of Ontario, but you'll notice that we specifically talk about the area we come from.
I hope you all have the handout we provided in front of you. On the first page is some information about brain injury and about our association. On the next pages we gathered information from individuals with brain injury, their families and friends, health care providers, the association's board members and committee members and others in the community about current issues and their possible solutions for individuals with brain injury in Ontario. Many of the comments will apply to all disabled individuals.
Head injuries are often called invisible because a person may look physically well and be able to talk but still be significantly disabled. The brain controls all of the body's functions: thinking, feeling, moving, breathing. Even mild to moderate brain injuries can cause changes in personality, thinking, memory, judgement; there can be loss of sight and hearing, coordination, loss of strength, even paralysis. The person may not be able to return to work or school, may not be able to look after a family or ever lead an independent life again.
Every year in Ontario, 12,000 people are hospitalized with a brain injury: 900 of them die in hospital and 3,000 of them never return to their normal way of life.
I'd like to draw your attention to the issues and recommendations on the following pages. This handout details issues under five main headings. The first is about children with brain injury, the second is "Access to Services," the third is "Repatriation," the fourth is "Community Integration" and the fifth is "Prevention." We took feedback from everybody we talked to, and they seemed to fall into five main themes. This is how we've organized and are presenting the information to you. On the final page is a number of recommendations.
I'd like to use my presentation time to just highlight some of the main issues and opportunities for improvement and then leave as much time as possible for discussion at the end of our time.
I'd like to start with the paediatric brain injury population. There is an apparently poor understanding of the unique issues and needs of children with brain injury. The majority of children acquire their brain injury through falls, bicycle accidents and sports injuries, not through motor vehicle accidents; therefore the majority have no private funding for services.
There is only one inpatient paediatric rehabilitation facility for children with brain injury in Ontario. This facility has 10 inpatient beds; therefore most children are discharged from an acute care facility directly to their home community.
There is great regional variability in the services that are available to brain-injured children. There is a lack of specialized education and training for teachers dealing with brain-injured children. There is a lack of good school liaison. There is a lack of specialized assessment services such as paediatric neuropsychology in all the communities. There is a lack of behavioural management for children, a lack of quality respite care for parents and limited availability of rehabilitation services such as occupational therapy and speech-language pathology.
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With respect to availability of community resources, our first recommendation is as follows: The Children's Hospital of Western Ontario, London Health Sciences Centre and the Thames Valley Children's Centre have submitted a proposal to district health councils to facilitate and coordinate services for brain-injured children in their home communities. Right now they're in the process of holding community meetings to receive feedback about the proposal but the initiative has not yet been funded. At some point this is going to come to government, and we hope that initiative will be supported.
With respect to the need for behaviour management programs for children, often children at different stages of development are not able to express their thoughts and feelings or don't understand why they are having problems after a brain injury. They communicate this frustration and anger by acting out aggressively.
The Child and Parent Resource Institute, CPRI, in London has expressed an interest and a drive to develop a behaviour management program for children. They have some expertise and want to develop more in this area. Unfortunately because of reduced funding they are downsizing their current services, but there's the interest there and a good potential and some expertise in developing behaviour management programs for children, and some space available because they have been closing some units.
Now I'd like to move on to a second issue: access to services. First of all I'd like to address the Ontario automobile insurance law under Bill 59 and just speak to individuals who are covered under this law.
Access to funding for services starts with what is accepted as evidence of brain injury. Until a brain injury has been established, there can be delays to treatment, or multiple, costly and sometimes unnecessary assessments carried out; for example, a neuropsychological assessment for the plaintiff, a neuropsychological assessment for the defendant. Also, funding can run out while the individual remains impaired and still in need of services.
Our recommendations to deal with those issues: First of all there need to be established diagnostic guidelines or criteria that can reliably detect the presence of brain injury and are accepted by all parties involved, including the insurance industry and the legal system, as evidence of brain injury. Some of the new diagnostic criteria that could be looked at include access to new brain-imaging technology such as PET scans; neuropsychological assessments; criteria such as loss of consciousness or length of unconsciousness; length of post-traumatic amnesia and so forth. These have been shown to be predictors of outcome in the research literature.
The patient, the medical personnel and health service providers, the insurance industry and the legal system must agree on the evidence needed to diagnose a brain injury in order to ensure that individuals receive the benefits to which they are entitled. Just to say that an individual has a brain injury if something shows up on a CAT scan isn't enough. For example, individuals with Alzheimer disease, and even quite advanced in the stages of Alzheimer disease, can have very little evidence of brain deterioration on a CAT scan. There might be some mild atrophy, but they can still be very significantly impaired, as we're well aware.
With regard to providing for length of services, this is particularly needed. I hear this a lot from parents of children who are very slow-stream, who are very slow to recover. They are gaining a small amount over a very long period of time. For example, if a child has an injury to the front part of their brain, they're going to act differently when they sustain that injury at, say, ages 5 or 8 than when they reach maturity in adolescence. Once you reach adolescence, the frontal lobes really are important in teaching you to use good judgement, know right from wrong, not be impulsive, all those things that are critical to the transition into adulthood. So new problems for the individual could emerge at adolescence even if the brain injury occurred several years previously.
The third issue I'll address is acquired brain injury not due to a motor vehicle accident. This would include people who are injured in falls or sports injuries, people who have brain infections, strokes or brain tumours. In this category would also be included individuals with brain injuries sustained in a motor vehicle accident but who have run out of funding and are relying on the publicly funded system.
We need to ensure that individuals are not denied care due to a lack of funding. Currently the public system is overburdened and tends to stress assessment rather than rehabilitation efforts, because the first stage in the process is that you need to assess the needs of an individual. Many needed public services either don't exist or don't meet the demand for them. The expertise exists out there in Ontario but we need funding and staff to develop the needed programs.
One issue that's often raised is about the two-tiered system. I appreciate that while there are sources of private funding available we're always going to have a two-tiered system, but what's not acceptable to me is when you're going from no services versus full services.
The fourth issue I'd like to address is community integration. This is when people are integrated back into their home community. They have several needs. The first is that they need to have a way to get around. We just heard an excellent presentation on the paratransit system and transportation in general for the disabled. A second need is housing. They need accessible, affordable, supported living arrangements. Often, remember, these people are going to be on limited incomes or benefits. They need community support.
The recommendations with regard to community integration: First of all, it would make sense to support largely volunteer-run, consumer-driven, non-profit community organizations like the Head Injury Association of London and District. I apologize, but I had to say that; it makes sense. You're addressing the needs of the consumer and you're getting a lot for your dollar. For example, we recently received financial support from the long-term-care division for community education in the various districts we serve, and that's going to go to great use.
The second recommendation is that the government include consumers in developing policy, developing service planning and evaluating the current and new systems and programs. We just have one question or concern, and that is the shift in responsibility for programs from the province to the municipalities. We're wondering if that's going to lead to a greater difference in availability of services to people depending on where they live rather than what they need. For example, how will the government ensure that a person from Port Arthur and a person from Port Stanley will receive services based on similar standards?
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The last issue I'm going to address is prevention. I saved this one for last because, boy, we'd prefer not to have to be here. If there was any way we could have it that head injuries didn't exist, that would be ideal. The number one starting point in serving the population in the communities is to prevent a brain injury from ever happening. We applaud the government for passing the bicycle helmet legislation. We only hope every day that it will be extended to include adults in the near future.
Mr Davies: I have a few concluding comments to walk you through the other information that is in the package you received today, starting with some general information about the Head Injury Association of London and District and the usual kinds of statistical bits and pieces that apply to an organization like our own, and even a whole sheet of statistics on head injury in Ontario.
The other bits of information here relate to a newsletter, first of all, that we produce monthly. Apologies: We don't have one for February; it's at the printer's as we speak. However, the December issue, which was our last one, was produced by a volunteer who is a survivor and a member of our association. You'll see in here a couple of articles, including the article on the front page, which were also written by survivors. It's very helpful for them, for their self-esteem certainly, to be able to work on documents like this. It's certainly better than I can do and it uses a volunteer to do it and is a great contribution.
On the very last page of the four-page little handout that has a pie chart and a bar graph in here, just a quick example of some very recent data that support the use of helmets and indicate in there the need for prevention types of activities that our association, as Dr Lazosky was saying, is interested in doing.
The last that I would like to deal with is the list of references. There's a short bibliography in here. I'd like to draw your attention to two of the documents. I have one copy of each of them which are my office and working copies. The Report to the Ministry of Health on the Caregiver Information Support Link, which looks like this on the front cover, actually must be in here in the Legislature somewhere, because it was submitted to the Ministry of Health last February or March, thereabouts. It is a project which the ministry funded several years ago, and which continues to be funded. It provides us with some very good information about who the head-injured people are in the province of Ontario and the kinds of services they are using. We find this sort of document very useful in helping us to do service planning.
Included as appendices in this report are summaries of the hearings that were held by the Ontario Brain Injury Association, which is our provincial organization, hearings that they conducted in 1989 and 1984 -- a very long title, but anyway, the status of wellness to do with people with brain injuries.
The last document is called A Continuum of Opportunity for People in Ontario with Acquired Brain Injury. Produced originally two years ago, it did last summer receive endorsement from the long-term-care division of the Ministry of Health here in Ontario. It provides us with a really good working tool as we and our fellow organizations in the business of dealing with people with head injuries go about our job of planning services not just at the local level, but also across the whole province. If you're not able to acquire these documents, let me know; I can certainly direct you to where they are.
As Dr Lazosky was talking, and as I thought about her presentation, it seemed to me that the issues we're dealing with cut across several ministries. It's not just health -- it's education, it's community and social services, it may be citizenship and so on -- so it seems appropriate that we were invited to appear before this committee, which deals with a number of these different ministries. Thank you very much for having us come.
Ms Lankin: I appreciate your presentation. One comment: I think you're being polite when you thank the government for passing the bicycle helmet legislation that had been proposed by Mrs Cunningham, whom I know your association has a good relationship with.
Mr Davies: She's one of our valued members.
Ms Lankin: I remember very well being the Minister of Health at the time and fighting to get support in our caucus. There was resistance, of course, but that was there and supported and, including adults, would have gone forward. Unfortunately, this government has stepped back from that in terms of what it has passed. I for one still remain a very strong advocate of Dianne's original legislation from a prevention point of view. I was very convinced by all in the field that it would make an important contribution.
I was interested in the questions that you raised around repatriation, again particularly because when I became Minister of Health I was dealing with a family in my own community who had a relative down in the United States. It's similar to one of the earlier presentations that we had where individualized funding would have seemed to be the transitional approach that would have helped that family to gain the services, as well as the point she raised around certification of services and developing the expertise, because it was pretty thin here in Ontario. I think McMaster and other areas were starting to develop a much better level of expertise of treatment.
Do you have any thoughts of what the key next critical steps are going to be to ensure that repatriation can work and that the network of services is equitable across the province, and accessible?
Mr Davies: A lot of thinking ahead, because certainly the number of people in the official announcement that came through a year ago December, I think it was, was small -- they were 70 or something of that order -- in relation to the 12,000-odd people in Ontario every year. They are a very small number of people, but they have had incredible needs in terms of their behaviour and so on.
Thinking ahead in terms of who's going to look after them when they get here, are the places going to be available if they're young enough to want to deal with educational concerns? Will they be there in the proper format? Will they have housing? Will they have transportation? Will they have some effective daytime -- I'll use the word "clubhouse"; it's a technical word in our work, but it's a type of proposal that allows people to develop some meaningful day-to-day daily activities if they aren't gainfully employed, and most of these people won't be. I think there's a lot of forethought involved.
Mrs Helen Johns (Huron): It's my understanding from some of the research I've done before you came that the province spends approximately $33 million on people with acquired brain injury and then spends money through OHIP and doctors and things that are very difficult to tie into one group or another. I know that one of the reinvestments we've made since the election has been to put money into repatriation. It's my understanding that we had approximately 100 people who had to go to the States to have services because services weren't available here and that the government has put some money together to try and bring them back to Ontario.
The question I want to ask is about the quality of life for the people who have come back to Ontario, what that's meant to their families and their friends as they have come back into the province, because I've heard through my travels that there have been some pretty substantial family hardships and that by reinvesting in this area, in effect, the province has made it easier for families. Can you comment on the quality of life and the issues that have affected the 25 who have been repatriated, and I guess another 25 next year?
Mr Davies: I must say I don't know of any of the 25 who have been repatriated or who are coming back next year, but in the past, even before this announcement was made, I can think of at least three people just off the top of my head, I think including the person who wrote the cover story on this newsletter you've got here, who have been down to the States, far away, to Michigan and beyond or California, Texas, and it certainly was very difficult on families. You could not keep up the type of family contact that encourages the emotional recovery to health again, never mind the physical part of it.
Dr Lazosky: I guess the main thing is what they are coming back to. That was the main hardship, that if they were sent away for their treatment and nothing was done in the home community, no resources were developed in the home community, then they came from a great system in the States, say a farm-type concept in Texas for behavioural management, and they come back home. I guess that's the main issue I hear all the time. The one issue is, what are they coming back to? The second issue I hear a lot from families is: "I chose not to have my child go to the United States. I chose to sell my house, build a new one, do everything to keep them home. Why aren't we getting money to help now? These people coming back will have additional money, but my child won't have any additional money, and all our funding has run out."
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The Chair: Mr Gravelle -- Ms McLeod?
Mrs McLeod: I'll lead off and then there may be a few moments for my colleague.
I'm obviously really concerned about the lack of services available for those who have brain injuries. The repatriation question that Ms Lankin has asked is a critical one, but also the lack of services for the 3,000 individuals a year who may need some support because they can't return to their way of life is a concern. It becomes an even greater concern as we see more and more the responsibilities for social housing, for transportation, all those, shifted to the municipalities, and you've noted that in your brief.
We only have three minutes, so I'm going to try to focus on one question in particular. You mentioned that many of the people you would be working with would run out of their own private funding support to be able to provide their services and would need public support. On the whole question of redefinition of the disabled, an earlier presenter said they understood that the restructuring for disabled programs was really a done deal, without a lot of consultation.
The issue of redefining the disabled, if that is part of restructuring, would have to be a concern for those who are dealing with head injuries because of the fuzziness, the lack of clarity of the definition of what constitutes a brain-injured individual. Could you just comment on that whole issue of definition and how it might affect the people you work with?
Mr Davies: I'm smiling because you use the word "fuzziness," and that's hit the nail on the head. It really is fuzzy. But as I heard a psychologist, I think he was, about a year ago say, the brain is not a knee. As Dr Lazosky has said, it's really very difficult to try to figure out which one of the combination of billions and billions of neurons and cells and this and that which fly around in the brain has been injured.
It's becoming clear to me, after being in my position for almost three years now, that people with brain injury need to be included among all the rest of those who have very visible disabilities, because the cognitive disability really does a lot for changing who a person is. Without any disrespect whatsoever, and I don't know if anyone is in the room who uses a white cane, who uses a hearing aid, who wears glasses, who uses a wheelchair, who uses a cane or crutches or a walker or whatever, you can see all that and you can react and you can do whatever, but you can't necessarily see the person with a brain injury, yet they have as much of a disability as anybody else.
Dr Lazosky: An impact I've seen is, if I see somebody who has had a brain injury in a motor vehicle accident, they can get hooked into services that are specifically ministry funded or privately funded. Then I have somebody, a young man with a brain tumour, who's trying to go back to finish off his OAC level, has plans for university, and there's no funded rehab available for him through the public system. There is through the private system if you have the money, but the money is a lot.
I'm constantly trying to scramble to get people to do pro bono work or look for unique ways to get people some services to help them along. But to look at the person's face and say: "Okay, I've done the neuropsychological assessment. Now what?" sometimes I have to say: "Well, I'm not sure. Let's see if we can work something out. We'll make some phone calls, but this is the way the system is."
The Chair: I'm sorry, your time is up. Thank you very much for your presentation and for coming all the way down to be with us this afternoon. It was a very interesting presentation.
PATRICIA SPINDEL
The Chair: Next we have Patricia Spindel. Welcome to the hearings. You've been sitting here for a while, so I guess you know the procedure. Please state your name and begin your presentation. Thank you for coming.
Dr Patricia Spindel: My name is Patricia Spindel. I believe you have in front of you a submission I brought. That's going to provide some additional information to supplement the remarks I'm going to make to you today.
First of all, I appreciate very much the opportunity to speak with the committee today on a subject which greatly concerns me: funding cuts to people with disabilities. I am speaking to you today as a citizen, a taxpayer and as someone who has for many years tried to assist older adults living in nursing homes and people with developmental disabilities and their families to improve the quality of their lives.
For eight years I was a staff person with the Ontario Association for Community Living and for six years I worked as a volunteer with an organization called Concerned Friends of Ontario Citizens in Care Facilities. Today I spend a lot of my time trying to help people with developmental disabilities and their families who are struggling just to get by, and I think that's a tragedy. I am here because in almost 25 years of doing both professional and volunteer work in this area I have never seen the pain, heartache, anxiety and fear that I am seeing today. I don't think the people making the decisions in this government know what kind of pain they're causing to other people; at least I hope it's just that they do not know.
I want to focus today on three things: cuts to direct services for people with developmental disabilities, cuts which have occurred in special services at home funding to people with developmental disabilities and their families as a side-effect of government policy decisions, and the humiliating and dehumanizing way that people who have spent their lives caring for people with disabilities have been treated by government in the past year or more because of these funding cuts.
None of you, as legislators, entered public service so that you could do harm to people who are unable to care for themselves and to those who care for them. None of you, I hope, intend to create fear and anxiety in people who are already struggling with physical, developmental and psychiatric disabilities. Yet, sadly, that is what is happening in this province because of the policies of this government and because of some of the policies which were introduced by the previous government. As legislators, you have a responsibility to assess what the impact of your policies will be before you make those policies, not after you have made them, as is now occurring at this committee. Nevertheless, action taken to reverse a bad decision can be positive, and I am here today to ask that you reverse some of the bad decisions which have been made in the past year or more.
Cutting funding to already underfunded direct services to people with developmental disabilities -- that's a term formerly referred to as mental retardation -- by 6% is a bad decision. There have been waiting lists of eight to 10 years for group homes in many communities for a long time. Those waiting lists are getting longer now. Many people on those waiting lists are receiving no government assistance at all.
Cutting funding to community mental health agencies by 2% and then by 3% was a bad decision. It is leaving those agencies struggling to meet the needs of people with schizophrenia, bipolar disorder and a range of other mental health problems. It signals the end of any possible cooperation between those organizations and developmental services agencies which are trying to address the needs of people with dual diagnosis. I am now referring to developmental disability and psychiatric diagnosis.
Some front-line developmental service agencies are now operating with only one staff person per shift in their group homes, placing their clients and workers at risk because of inadequate levels of funding. Operating group homes with people who have returned from institutions and have very complex needs as a result of their institutionalization with these low staffing levels is a tragedy waiting to happen. What is shocking is that the Ministry of Community and Social Services seems not to want to know anything about this. They tell me they do not know what staffing levels are in group homes in the developmental services system, which is funded by their own ministry, and they seem to be taking no steps to find out.
Here in Toronto some non-profit agencies have told the ministry that they cannot continue to relocate people with very complex needs to the community from downsized and closed institutions unless they have appropriate levels of funding to match the people's needs. I believe you've heard from the MARC group at this committee. That is a responsible position to take under the circumstances, but these same service providers were told by ministry staff, "If you can't do it cheaply enough, we'll go to the private sector." That is irresponsible behaviour on the part of the ministry, and it borders on abuse of power by government. It also ignores the funding realities that these agencies have been trying to bring to the government's attention.
You cannot provide appropriate service to a person who has come from an institution where he or she has acquired self-abusive or other maladaptive behaviours which have resulted in his or her need to be under constant supervision on $56,000 or less per year, yet that is what government is now prepared to pay in per diems, the person's needs notwithstanding.
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Funding developmental service agencies too low is also causing the labour strife which we're currently seeing at the Metro Toronto Association for Community Living and at two other organizations serving people with developmental disabilities and autism in the Ottawa area where workers have been locked out by their employers after only three hours of bargaining and replaced by contract workers. These are not simple labour disputes which are somehow separate from provincial government policies and priorities. It is this government's downsizing, cost-cutting and restructuring agenda which is leading to these disputes, and that too is irresponsible behaviour on the part of the government.
The people caught in the middle of these labour disputes are people with autism and people with developmental disabilities. They and their parents do not understand why their worlds are being turned upside down. Their parents have told me how afraid they are of what is happening to their sons and daughters and of how afraid they are to complain because they might lose their spaces. They know they would have to wait another six to 10 years to get any comparable service for their loved ones and so they're forced to put up with poor service. Who of us would want that for our sons and daughters? And if it's not all right for our sons and daughters to have substandard vocational assistance or substandard living accommodations, then why is it all right for people with developmental disabilities and autism?
The fact is that there's something wrong with the government's priorities when it cuts funding to agencies providing support to disabled people which are paying their staff under $28,000 per year at the same time as it increases the salaries of senior government bureaucrats who are making these irresponsible cuts at the government's bidding. Many senior ministry staff are making over three and a half times what front-line staff people are making. That is the result of misguided priorities on government's part, not lack of funding.
There's something wrong in this province when one doctor makes as much per year as 12 or more front-line staff people working in associations for community living. The province has settled with the doctors and yet it is demanding through its transfer payment agencies more and more wage and benefit concessions from front-line staff making less than a tenth of what a doctor makes. Why?
Is it because this government cares so little about the quality of service and support that people with developmental disabilities get that it does not care who looks after them? If that is not true, then reverse the 6% cut to agencies serving these individuals. Give back the $50.4 million that has been cut from these organizations in the past three years. Give back the over $30 million that this government has cut in the past year alone.
The minister keeps saying that she has not made cuts to the special services at home program, a program which provides individualized funding to families caring for people with developmental disabilities at home. Yet families all over this province have been calling and telling me that their funding has been cut, in some instances by 50% to 60%. These families were getting the bare minimum in support to begin with and now they have half or less. Why?
Because the minister and her senior bureaucrats, probably the same ones who are now getting $40,000 a year more, thanks to Mr Eves's generosity, had decided that no more money could be added to that program in spite of the government's stated support for individualized funding during the election. Because the same amount of money had to be stretched to serve more people, they thought, the result was severe cuts to some families in order to serve other families as families were pitted against families in their quest for scarce resources. It would be difficult to think of a more demeaning approach to funding families than this.
We have yet to learn whether or not the very recent announcement of more funding for special services at home will reinstate the funds which have been cut from these families or simply attempt to address the long waiting lists for special services at home. There's no doubt that the minister's recent announcement will help some families and that it was a good beginning, but $6 million is not nearly enough to end the desperation that many of the families who have been cut feel.
In some cases last year area offices overspent in the special services at home program by almost $1 million. This year they've been held strictly to their funding targets. Because of this, families in those areas where MCSS area offices overspent last year have been cut this year as area offices attempt to meet their budget targets.
While the minister consoles herself with the idea that she has not made cuts to this program and that she has thrown a few dollars at the problem, many families are reeling from the very real cuts that have been made to them. It trivializes their plight every time the minister says that she has not made any cuts and it trivializes their plight to distribute what amounts to $500,000 or less to each area office when the minister knows that the very real needs of these families are not being met. You will by now have heard at this committee what kind of personal impact that has had on some of these families, and I can tell you it's just the tip of the iceberg.
Now the government wants to change the definition of "disability" to those most in need. Families which have received special services at home support for years are now in a position where they could be bumped by another family which the government considers to be more in need. They have received no assurances from the ministry that this will not happen. Once again, a policy like this will pit families against families. The government is playing a very dangerous game with people's lives.
When you compare how little most families get in funding to care for their loved ones at home to what government would be spending if those same people were in residential care, it is easy to see that these families are saving taxpayers millions and millions of dollars per year. For their caring and compassion these families have been told that the pittance they have received has already been cut or may be in jeopardy. Why?
If this government cared at all about these families, it would quadruple the funding to this program immediately and recognize it for what it is, a bargain, and would recognize these families for what they are, gifts to taxpayers like me. These families are models of what every person in Ontario should be: caring, committed people who understand that investment in others is never misplaced investment and that it is far more precious than investment in commodities.
So why is this government not supporting these families better? Why can it find millions to settle with the doctors and pay its senior bureaucrats more, why can it find millions to continue to support an outdated, decentralized area office structure in the Ministry of Community and Social Services which costs taxpayers almost $173 million a year, and why can it find billions for a tax cut, but cannot find $25 million more for families and cannot put back the $50 million that was taken from the developmental services system? Why?
Could it be that this government does not have its priorities straight, that it cares so little about the plight of these families that it patronizes them here at this committee with false whining about a deficit that is not an issue when other priorities like doctors' salaries and tax cuts are on the table? If not, then now is the time to do something about it.
The government may think that these cuts are common sense, but many taxpayers like me see them as an absence of common decency on the part of this cabinet. Do the right thing and put the $50.4 million back into the developmental service system and do what you said you would do and increase dramatically the funding for special services at home and individualized funding.
The government has tried to convince taxpayers like me that its policies are deficit-cutting policies, it has tried to convince people like me that it needs to cut jobs to create jobs, that it needs to cut services to people to preserve services to people, but the facts do not align with the government's rhetoric.
The facts are that this government is not busy cutting the deficit. Giving more money to doctors does not cut the deficit. Paying senior bureaucrats more does not cut the deficit. Giving out tax cuts does not cut the deficit. Maintaining unwieldy, decentralized bureaucratic structures in the Ministry of Health and the Ministry of Community and Social Services which are costly and not accountable to the public does not cut the deficit. None of these things cuts the deficit, and yet these seem to be the government's priorities.
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Where is the Conservatives' legendary management expertise when you are unable to rein in an unwieldy bureaucracy in the Ministry of Community and Social Services that continues to maintain itself in the style to which it has grown accustomed at the expense of direct services to people with disabilities? It gives you bad advice and it gets you into political hot water repeatedly because of ill-advised policy decisions. The government of Bill Davis would not have stood for it. That government would not have made such deep cuts in funding to people with developmental disabilities, deficit or no deficit.
The tax cut is a campaign promise Mr Harris says he is determined not to break. Yet he has broken his promise not to cut services and supports to people with developmental disabilities as if they somehow do not matter as much as taxpayers like me. Well, they do matter just as much.
Taxpayers like me who also care about other people, who do not enjoy some of the advantages and the privileges that I do, like good health, a mind that works well most of the time, arms and legs that get me where I want to go and a reasonably decent income, would rather see this government balance its economic cost-cutting zeal with some social responsibility. I would rather see this government get its priorities straight and inject some common decency into its political agenda.
You can find the millions to do so by dismantling the area offices in the Ministry of Community and Social Services and returning to a more efficient, centralized system of administration where you can at least track where the money goes. There are tens of millions of dollars in savings sitting right there which could be redirected to families who need that money. With all the disentanglement going on, there won't be much left to administer anyway.
Then you can tell your senior bureaucrats that there are others in this province who need the money more, people like the ones who have appeared before this committee -- Veronica Manuel from Thunder Bay and Irene Phelps from Durham region -- and take back those big pay increases. You could ask the doctors and some of the other high-income earners and corporate officials who have supported your political campaigns if they would care to make donations to the programs and services for people with disabilities, which are on their last legs right now thanks to your policies. Finally, you can cut the tax cut, reinvest the money in the services to people with disabilities which you have cut and don't break your promises to them. They deserve at least equal treatment with taxpayers like me.
That would end the humiliation that families of people with developmental disabilities face when they have to fill out forms which ask demeaning questions that reduce them to the status of beggars, and they have to reapply every six months for the pittance they receive. That would further ease the anxiety of older parents struggling to find resources for their loved ones before they die and that would also help to ease the minds of people with disabilities living in group homes who do not have enough people to look after them right now.
This government has shown over and over again how ruthless it can be. Is it destined to forever sing that one-note tune or can it also show that it can be compassionate and fairminded and govern for all of the people of Ontario, not just those who are well organized and who have wealth and influence and who are able-bodied? It will be by your actions, not your rhetoric or your expensive TV ads, that you will be judged by taxpayers like me when the next election comes.
It may come as a surprise to you to learn that I will not be judging you on whether or not you gave me a tax cut, and neither will my neighbours or friends. I will be judging you on whether or not my elderly neighbours can get the help they need, and whether my friends' sons and daughters who have developmental disabilities are getting the support they need to continue to live in their own communities. I will be voting for a government that balances the need for fiscal responsibility with compassion and a sense of common decency.
Thank you, and I'd be happy to answer any questions.
Mr John L. Parker (York East): Thank you very much for your presentation this afternoon. Thank you in particular for combining your expression of concern with a few concrete recommendations. I appreciate that. Actually, I'd like to follow up on one of your recommendations because we're in an area where I have probably less exposure to the field than you have, and you might be able to provide me with some guidance. You had some particular recommendations for how the Ministry of Community and Social Services might restructure itself to serve people better and save money for the taxpayer. Can you help us out with some more detail on that?
Dr Spindel: I can tell you that years and years ago, I guess before 1982, the ministry was much more centralized than it is now. We found that removed a layer of bureaucracy between the decision-makers and the people who were living with the decisions those decision-makers had made. I think that's a more reasonable approach. When they went to the 12 area offices, that inserted that additional layer of bureaucracy. I don't believe this ministry needs 12 area offices to administer what is a diminishing budget at this point. Even if you went to a regional office structure so you eliminated a lot of existing administrative costs, that would make more sense.
Personally, I think you might be better off centralizing in that ministry because there's been so much difficulty for so long with trying to track where the money goes. I don't think many people at the central ministry level actually know where all the dollars are being spent in that ministry, and so having less bureaucracy out there in the field would probably be helpful in tracking the dollars and also in assessing and tracking the needs that are out there.
It would make sense to me to have someone from the central ministry go out to various areas three or four times a year and actually meet with people who are receiving services and with service providers and make their own assessments about what the needs seem to be than to be having this sort of decentralized structure where much of the information from the front line never gets to the central decision-makers anyway.
Mr Parker: We often get the message that you need those regional offices, those local offices, because they're closest to the people and they can deal immediately with the local needs, the local concerns, and that's how you get a more direct, accountable service.
Dr Spindel: I know you're being told that, and I've heard that said over many years, but I think you've heard from some of the people who've been dealing with those local and regional offices, and that certainly is not their perspective. I know that some people in some parts of the province have a good relationship with some people in their local offices, but generally speaking my experience in talking with parents and service providers has been that this is not necessarily the case at all. I think the same thing could be achieved if you had people coming out locally to those areas three times a year and talking to people -- the decision-makers, the ones who are actually making those decisions at Queen's Park.
Some of you may remember Dorothea Crittenden, who was the first woman deputy minister in Ontario and probably in Canada. She served under the Davis government. One of the things she did repeatedly was something that deputy ministers nowadays don't do any more: She went out and looked at what was going on, looked at the services that the ministry funded. Frankly, I think she made some very good decisions because she went out and saw for herself exactly what was going on.
Mr Michael Gravelle (Port Arthur): Thank you very much, Dr Spindel. That was really a very moving presentation. You hit a lot of buttons. It's almost more of a comment because I think you really summed everything up very well. Certainly you made reference to the fact that you didn't think the government members probably realized the pain they were causing in terms of families.
Dr Spindel: I don't think they do.
Mr Gravelle: At least you hoped they didn't, because if so, it would be pretty frightening. The purpose of this committee, obviously, is to study the impact of the government cuts, and there have been more as a result of the announcements more recently, but I hope that we can reach some conclusions. Your recommendations are much appreciated.
There will be an opportunity for this committee at the end of the hearings to put together some recommendations, and I hope the government members have been listening to your presentation and to the others that have gone on last week and this week because there will be an opportunity to hopefully correct some of those things. I trust they would do that. I just wanted to thank you very much for coming here and I'll pass you on to Mrs McLeod.
Mrs McLeod: Just a couple of questions: You're obviously very aware of what's happening in the field. Do you hear any rumours or have any sense of some of the changes to the bureaucracy that might be pending? For example, as the community care access committees are set up for managing long-term care, would it be your sense that they will also be assigned the responsibility of any funding, even the special services at home funding that community and social services is now doing?
Dr Spindel: We haven't been able to confirm anything because it's not easy to get information out of the government these days, so anything I would tell you would just be rumours anyway. There are rumours going both ways. There are rumours that say developmental services will stay with the Ministry of Community and Social Services; there are rumours that say it's going to be transferred over to the Ministry of Health, and that could possibly result in that funding being administered by community care access centres. I've heard both, but I'm not able to confirm either one because we can't seem to get access to that information.
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Ms Lankin: It's good to see you again. Two questions: Let me just follow up, first of all, on Mrs McLeod's question to you. It is of great concern to us as we see the money for long-term care, $1.6 billion or so, being shifted out of the Ministry of Health down on to municipalities and we hear the government say, "But we're going to maintain $17.4 billion in our health budget." We've been unable to get a clear answer of whether or not that means they're simply going to show some kinds of transfer payment arrangements with the municipalities or whether that money would appear to be an increase in health spending or whether portions of other ministries without their budgets are going to be transferred into that funding envelope.
There have been times in the past where services to persons with disabilities had been funded through the Ministry of Health. I'm sure you will remember some of the transfers over to Comsoc, and I remember the whole debate about health versus Comsoc in terms of long-term care. They're very different cultures in these ministries, as I found out.
Could you comment on the funding implications but also on the service ethic implications of shifting that back to health?
Dr Spindel: Actually, the shift came for developmental services and children's services in 1974. That was after the Williston report in which two people with developmental disabilities -- one suffered frostbite, another one hanged himself -- left one of the large institutions. It took tragedies for the government of the day to actually look at the need to shift people out of those large institutions, and they felt that the only way this could happen would be by shifting people from the hospital schools, which is what they were called then, which were administered by the Ministry of Health, into the Ministry of Community and Social Services. In fact that was a very positive initiative because that's how deinstitutionalization started; that's how community options were actually created.
The biomedical model, which dominates in the Ministry of Health, is a model that does not fit developmental disabilities because developmental disability is not an illness; it's a condition that people live with, and of course our society creates a lot of barriers for those people. But the fact is that this service is much better placed in the Ministry of Community and Social Services, as bad as it sometimes is, than it would be in the Ministry of Health because families do not want to deal with doctors and nurses and they don't want their children's conditions medicalized. They want people to be part of their communities, they want them to have full inclusion in their communities, and that isn't going to happen if people's conditions are medicalized.
The major concern, I think, that families have is avoiding that biomedical model. They don't want to be forced to use home care. They don't want to be forced to rely on the old-style institutions as they have in the past, because they've found that those systems have been totally unresponsive to their needs in many cases. That's why it's much better in the Ministry of Community and Social Services.
I've heard the same rumours that there could be a shift over and that the dollars will not necessarily follow the people out of one ministry into the other. I've also heard those rumours persistently. But families raised very strong concerns about that. I know the family alliance put together a brief called Back to Purgatory, which described in very clear terms what that would mean for their sons and daughters.
Ms Lankin: Would it be possible for us to get a copy of that brief for the committee? Could you give us the reference again?
Dr Spindel: Back to Purgatory. I can ask the family alliance to send one, sure.
The Chair: Dr Spindel, thank you very much for your presentation this afternoon. We appreciate it.
ONTARIO ADVOCACY COALITION
The Chair: Our final presenter for today is the Ontario Advocacy Coalition. Please come forward.
Ms Lankin: Mr Chair, I wonder if I might just give an advance apology to this group, many of whom I've met with before. It's good to see you again. At 6 o'clock I have to leave. I have a public forum across town that I'm speaking at tonight, just in terms of getting there in time. I will be sure to check the Hansard but I won't be able to stay to actually ask questions. My apologies.
The Chair: Thank you, Ms Lankin.
First of all, welcome. Thank you for joining us today. We look forward to your presentation. I see that some of you have been here this afternoon, so you probably know the format. If you would identify yourselves for the purpose of Hansard before you make your presentation, we would appreciate it very much. Please proceed.
Ms Mae Harman: Thank you for the opportunity of meeting with your committee this afternoon.
My name is Mae Harman. I'm the co-chair of the Ontario Advocacy Coalition, where I represent Canadian pensioners' concerns. With me are Patti Bregman, who is a lawyer with the Advocacy Resource Centre for the Handicapped; Ruth Stoddart, who is a staff member for the Canadian Mental Health Association; and Jeannie Kippax, who is one of our individual members.
The Ontario Advocacy Coalition was created in October 1986, bringing together a number of organizations that shared a common objective of securing a publicly funded, independent advocacy system with a legislated mandate to support vulnerable adults in defending their rights and interests. The coalition emerged in response to reports of many instances of abuse and neglect of seniors and persons with disabilities in the province in the 1970s and 1980s. Several of these incidents resulted in extended hospitalization for the victims, and in some cases the deaths of the vulnerable adults, leading to inquests and criminal prosecutions, all of which represent a substantial expense to the taxpayer.
The formation of the coalition coincided with the appointment of a former Progressive Conservative member of Parliament, the late Father Sean O'Sullivan, to conduct a review of advocacy, which resulted in the publication of the report You've Got a Friend in 1987. That report recommended the kind of advocacy system we were hoping for.
As all members of this standing committee will be aware, the Advocacy Act was proclaimed into law in the spring of 1995 and repealed one year later. Our coalition worked hard on the development of that legislation and on the planning for the work of the Advocacy Commission for close to a decade.
One of the best and most innovative features of the Advocacy Act was that the governance of the advocacy system was placed in the hands of vulnerable people themselves rather than in the hands of a government bureaucracy. Regrettably the legislation was never given a chance to demonstrate how effective it might have been.
With the demise of the Advocacy Act, our coalition took stock of its reason for being, and those reflections resulted in the document Fundamentals of Advocacy, which is appended to this brief.
Our coalition now consists of 51 organizations and six individuals. A sizeable majority of the membership is composed of individuals and groups which are or have as their members persons who are vulnerable because of their disabilities and/or advancing years.
You have copies of our brief and our recommendations. Ruth Stoddart is going to speak briefly to the proposed changes to social assistance.
Ms Ruth Stoddart: I'd like to speak a bit about income support for persons with disabilities. I realize this hasn't been addressed at any great length in our brief, but we believe it's important, so I'd like to talk a bit about it.
As far as the number of disabled Canadians, 1986 Stats Canada data indicate that about 2.8 million Canadians report having some sort of disability; 1988 data from Stats Canada also indicate that over 57% of disabled people who have at least some sort of income reported their income to be below $10,000 a year; 1994 stats from the Ministry of Community and Social Services here in Ontario show that of over 326,000 households that were receiving family benefits allowance at that point in time, over 16% were receiving family benefits because of some sort of disability. This indicates that there is a large number of persons with disabilities in the province and that a lot of them are of low income and/or depend on some sort of government income support program.
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What I'd like to address is the effects of changes to various income support programs and the cumulative effect that all these changes are going to have on people with disabilities. First of all, at the federal level, as this committee knows, talks with the federal government and the provinces are ongoing concerning changes to the Canada pension plan. Having attended hearings last year, I'm well aware that there is talk about changes to the CPP disability benefit, probably in the direction of decreasing it, tightening eligibility requirements and therefore lowering the number of people who are eligible.
The second thing that happened at the federal level last year was that what is now called the employment insurance program was changed to in effect penalize repeat users and have longer periods of eligibility requirements for people entering the system and re-entering the system. This change has a large effect on people with disabilities, particularly people with cyclic disabilities, who are able to work at some points in their lives and not at other points. If they're continually going in and out of an employment insurance system, they're going to be penalized for this, even though they are able to work at times and are quite willing to work.
The third change at the federal level has been the change in the Canada assistance plan to block funding to the provinces. There is a great concern among people with disabilities that this block funding has not been accompanied by enforceable national standards that will control how the provinces are going to spend block funding and a large fear that various provinces, if not various areas within provinces, will be providing different levels of incomes and supports to persons with disabilities.
At the provincial level, there were changes to workers' compensation legislation which have resulted in the denying of any claims for chronic stress, which, working for a mental health organization, was of great importance to our organization in particular and is also important to other people with disabilities.
The second large change is to general welfare assistance and family benefits allowance. We have obtained statistics that say approximately 40% of those presently on general welfare assistance indicate that they have some sort of disability, and a lot of these people are waiting to be assessed to get on to what's presently family benefits allowance. As this committee is aware, the Ministry of Community and Social Services is changing the social assistance program to be split into the Ontario Works program for people who are able to work and a program for persons with disabilities who are unable to work. I can't remember the last name I heard for it, but I think it was the Ontario income support program.
That program has caused a great deal of concern, and the Ministry of Community and Social Services has been holding hearings concerning various parts of the new program. Of particular concern to people has been what the definition of "disability" will be. There is a feeling in the community that the disability definition will be changed so as to disallow people who are currently eligible from receiving what are presently FBA benefits and forcing those people into what's now the GWA program, to become Ontario Works, and that people who are unable to work will in fact have to do some type of work.
Finally, as of last week's announcements from the government, the municipal government is involved with things. The GWA program is to be transferred, as is the new disability program, and costs shared 50-50 with the municipalities. In addition, social housing is to be transferred to the municipalities.
The large concern of the disabled community with these transfers, although we're not sure what form they're going to take or how they will be implemented, is that transferring things to the municipalities will fragment programs even further and result in larger inequities in various areas of the province, particularly in municipalities which don't have the funds available to provide supports for people with disabilities which the province has previously provided.
Overall then, what we believe needs to happen is that there should be a comprehensive study of all programs affecting people with disabilities, in particular income support programs, instead of slightly altering each program in isolation of the other one, because what happens when you alter each program in isolation of the other one is that costs get offloaded from one level of government to the other or within levels of government. We don't believe this sort of reform will be beneficial at all to people with disabilities in the long term.
Ms Harman: Thanks, Ruth. Patti Bregman now is going to talk about rights advice and the official guardian and trustee.
Ms Patti Bregman: I'm also going to step back for one minute. I'm not going to go through the first part of our brief, but I really want to urge you to both read the beginning of our brief and think about it.
One of the things that concerns us the most as we go around the province -- and I've done a lot of speaking to groups as well as then take calls -- is this notion that cuts are only about the bottom line. What we're seeing are not cuts that are that easily identified. It's not a matter of saying the global budget is cut. What you need to think about is the impact on the people who are supposed to receive the services. When it gets down to the bottom line, the reality is that if the person who needs the services isn't getting the services they need or the services aren't going to the people in need, that is a cut to service and that is wasteful delivery of service.
We think that's more and more what we're seeing happen in this province, and you'll hear more about it next week from some other groups. The number of programs where services are not able to be delivered because other programs that are required as well are not in place is growing, which means you've got an enormous amount of waste out there and an enormous number of people doing without service. It's real. This is not something that is political or otherwise.
I want to talk a bit about advocacy, because I think advocacy and the change is quite relevant in this context. Advocacy has always been talked about as this terrible adversarial thing. What we have always said and still believe is that advocacy is about preventing vulnerability. Right now in this province the systems in place to prevent vulnerability and therefore prevent injury, prevent death, prevent abuse, are gone. It's one thing to say you don't want the advocacy system and that you'll have another one. It's been 18 months; there is nothing in place. There has been no replacement for the system, and the other changes you made through Bill 19 are in the process of making life a lot worse. I will give you two areas where we're seeing serious problems -- and I know some of you are, because fortunately many of your constituency offices call our office when you're having problems, and we have had calls from constituency offices about these problems.
One is the public guardian and trustee. With no advocacy system in place and volunteer agencies and institutions being forced to lay off the advocates -- for example, social workers are being laid off in agencies and hospitals -- people have nowhere to turn. So where do they go? They go to the public guardian and trustee, who is required by law to investigate allegations of abuse. They're not. I know the stats; I've seen them. They're investigating less than 50% of the cases that come to them. I've had calls from social work departments at institutions that know the law and know the system. They cannot get responses from the public guardian and trustee for very clear cases where their client is being abused. That's unconscionable, and that is because there are cutbacks to the public guardian and trustee and they're being told to prioritize.
There is absolutely no excuse for not responding to allegations of abuse. I don't know how you can possibly justify it, and I strongly urge you to do something about it before you're forced by an inquest to come to account. This is something, as I said, your constituency offices have called me about. It's not something we're hearing simply from families, although families are calling us. This is an enormous, very serious concern out there.
The other concern is rights advice. Many people didn't like the idea of rights advice, including many family groups. Well, I can tell you now, the tides have turned and those families, including some aligned with Friends of Schizophrenics, are now calling and saying: Where are the advocates? Where are the rights advisers? In one case somebody's brother was moved from a community hospital to a provincial psych hospital without their being advised of that. He died in restraints. The family never knew he was there; no rights adviser ever knew he was there. He died from positional asphyxia, and they took eight months to get an inquest called because there are cutbacks to the coroner's office. These are really serious problems.
Fine, you've gotten rid of the Advocacy Act. We still think and strongly believe there is an absolutely critical role, even more so with cutbacks, of having some form of advocacy out there, with the knowledge that you have people who know what's happening, know the law and can respond in a timely manner and help people get what they want. The United States has recognized this and there is an advocacy office in every state, mandated by law. New Zealand has recently put into place a national advocacy system. The UK is putting in an advocacy system. Recent reports out of the US looking at managed care said the only way it will serve people with disabilities is with advocacy in place.
This isn't about being adversarial. This is making sure that those who can't be heard have some kind of voice.
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Ms Harman: On a more personal level I want to say that I grew up in a rural community during the Depression. We didn't have much by way of material things, but what we had, we shared. The prevailing community philosophy was the social gospel which later spawned many of our social programs. We believed in our role as our brother's keeper and we acted on it. If our neighbour needed help, we went to his assistance. Life is very different today in most communities, especially in large, urban, impersonal ones.
My colleagues in the seniors' organizations and many others are appalled by the current denigration of those who are the most vulnerable in our society: the old, the poor, the sick, the disabled, women and children. The prevailing practice of this government is to reward those who have made it financially and to punish by cuts in financial supports and services those who are unable to take care of their own needs.
I have with me a copy of the diary kept by the daughters of Dorothy McKinnon during her horrendous two months in hospital. It is very doubtful that, without the continuous intervention of Mrs McKinnon's daughters, she would have survived. A similar story by Diane Mason appeared in the Globe and Mail on January 13. Dr Carolyn Bennett of Women's College Hospital warns: "Don't ever dream of sending someone to hospital on their own. The family should show up and do shifts. It's just safer." It follows that one should never go home from hospital unless there is someone there who is capable of monitoring your progress and providing appropriate care.
My next-door neighbour has no living relative in the world. Most of her friends have died or are in poor health. This is not an uncommon situation. Many people, especially seniors, have no one to whom they can turn to give care or to advocate on their behalf. The Advocacy Act, which would have made advocates available if needed, was trashed by the government.
As more and more nurses and other qualified care providers are sacked and health services are curtailed, seniors and the disabled will suffer the most from lack of care. We will be the least valued and the lowest on the priority list. We probably don't need to worry about euthanasia just yet, but neglect and abuse will accomplish the same thing more painfully.
Jeannie Kippax has prepared a detailed report on roadblocks and frustrations she encounters in trying to get assistance in her daily living and she will speak to some of these.
Ms Jeannie Kippax: I'm a disabled woman living independently in the community. I am wheelchair dependent for all mobility and the only support I now use is Meals on Wheels. The cutbacks I'm experiencing as a result of this government will soon force me on to home care and on to a homemaker.
I'd like to talk about one of the things we were told, that there would be no user fees: Copayments are the same thing. It's a fee I have to pay for my medication, $2 per prescription. I get a 90-day supply, but with some pharmacists, if you get your medication every 30 days, they'll waive the $2 and they get a dispensing fee every month. They win. So do we. We save good money, but that's against my ethics.
The drug benefit plan will pay for some medications but not for others. It will not pay for an EpiPen. That's a pre-loaded syringe with adrenalin for use in a life-threatening allergic reaction. I've had two. I was saved because somebody there had one. I cannot get one. I'm violently allergic to mosquito bites and bee stings. I can't afford it; I have to do without.
I require a peak flow meter; it's a thing you breathe into and it monitors how much air is in your lung. This will not only monitor my asthma but during my frequent colds it would monitor my lung function and we'd be able to prevent the many bouts of pneumonia I get.
The government will not pay for this, and so again I have to do without. However, the government is quite happy and quite willing to pay to send a registered nurse into my home up to four times a day, every day, so I can use the peak flow meter she's issued with. This doesn't make economical sense.
Similarly, the drug benefit plan now covers asthma medications in puffers and a thing called a spinhaler. You inhale and you don't have to puff. I can't use a puffer because of my disability, and I'm really concerned that in the cost-cutting measures, spinhalers will be seen as unnecessary. That would mean I would no longer have access to the asthma medication I've been on for the last seven years which has completely eliminated my need to have emergency trips to the hospital.
I'm also concerned about the choices the government elects to see as acceptable. For example, ODB will pay for pain medication including narcotics. I go to a pain support group. It's in a community health clinic and it's led by staff. This is not considered medical treatment, even though recommended by my physician. I don't get transportation assistance. But if I met one-on-one with the leader and did the same thing individually, privately, which would be more expensive, social services would see that as medical treatment and they'd pay transportation.
I'm concerned also about the fact that Bill 26 gives the government the right to require that specific clinical criteria be met prior to approving coverage of a drug by ODB. I'm going to use the example of Imipramine, which is primarily classified as an anti-depressant but has many widely accepted universal uses. One of those is in a person with a spinal cord injury. This medication will help to control and in some cases prevent the urinary incontinence that results from that injury. In people with chronic pain, the same drug is used in very low doses. It will control pain, in many cases far better than narcotics. It is also used, in very small doses, to overcome the sleep disorder that is a part of the fibromyalgia syndrome.
I have to tell you that if this government legislates a criterion that means only the clinically depressed can have this drug paid for by the government, a lot of us are going to have a lot poorer quality of life and we're going to have a lot more medical problems.
I'd like to deal with two other things. One is that as a result of cutbacks in the hospitals, my occupational therapy has been cut. I used to go three or four times a year. OT has enabled me to learn to use assistive devices to be fully functional in all personal activities, to do all my cleaning, laundry and housekeeping, to manage my chronic fatigue so that I fully participate in my community, and in fact volunteer in a number of ways. Now that this has been cut, I will probably have to go on to home care because as I deteriorate physically I'm not going to have somebody to help me learn how to do those things.
The last thing I want to address is the fact that the government is considering saying that you can only have two medical consultations per condition. My experience with my spinal problem was that the first doctor I saw pushed my little toe down and said: "Yeah, you need surgery. How soon?" When I asked if that was really necessary, he said, "If you don't want surgery, you're wasting my time." Sure, he got paid for that. The second one told me to stand on my toes and my heels and then he said I should go see a psychiatrist and find out why I needed to have chronic pain.
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If the government's criteria were in effect, that would be it. However, I was allowed to see a third doctor, a physiatrist, who specializes in diagnosing physical musculoskeletal problems. This man did a thorough history, a thorough physical, and ordered some tests, including a CAT scan. We found out I have central and lateral spinal stenosis, my discs had degenerated far worse than they would ever be expected to for a woman my age, and that I had severe osteoarthritis, and that as a result of that, I had permanently pinched nerves in my lower back.
It wasn't my overuse of the system that caused me to need a third consult. The government must recognize that not all doctors are equal. I ask you to consider the impact your cuts are having on my life. I've gone into more detail about others in my brief. It took me 40 hours to type it because of my limitations. I would ask that you please take the time to read it.
Ms Harman: What more would you like to hear?
The Chair: We have about two and a half minutes, if you want to summarize or if there are any questions.
Mrs McLeod: I think there would be a lot of questions. We only have a brief time. I want to thank all the members of the coalition for coming forward and making a presentation today. The other members may appreciate if I particularly thank Jeannie Kippax for the time she spent on the presentation and also for having been here I think to this point every day of the hearings. Given the fact it takes that extra effort for you to have been here, your commitment and your concern have been evident to all of us. I can assure you that we will not only give attention to the details of your presentation, but make sure that as many people as we can reach are also aware of them. Thank you very much for that.
If we have more than what will now probably be 30 seconds, I think we're going to have a lot of occasions to want to talk to you all about the role of advocacy as we start getting into this very strange situation of the new shared responsibility in long-term-care areas and the municipal responsibility for social housing. I know you can't even begin to answer if I were to say, how do we advocate for people who are going to try and meet social housing needs when there's no guarantee of rent-geared-to-income support left? We'll save that for another day.
Mr Shea: May I also thank the four of you for a presentation that was helpful, particularly helpful for me. A couple of observations: The Ontarians with Disabilities Act that you refer to on page 9, I think you'll be pleased to know that the commitment made by the government to deal with that in the first term is still being pursued, and within the economic goalposts that are being established it will certainly be brought forward, we hope, in this term.
The point raised by Ms Bregman -- can I just refer to that for a moment? You caught my attention with the emphasis on the advocacy and there was a quote you used that really spoke to me. It was, "If the person isn't getting the service they need, that is a wasteful service." That really struck me because I think all of us here would totally agree with you. Therein hangs the great debate perhaps about the old Advocacy Act. It was interesting that immediately after you made your presentation on Bill 19, I think you were followed by the chair of the Advocacy Commission, David Reville, who brought forward an adequate figure of $3 million that he thought would be appropriate, rather than the $18 million that had been set aside by the last government. Indeed, $3 million currently is in the budget, through the initiative for vulnerable adults and so forth.
I wanted to make that point very clear, because as I looked at the figures, I was astonished to see that in that last period of the government, $5.1 million had been spent on advocacy, but $3 million in excess of that just for salaries alone, which means that in essence something in the order of 7,200 telephone calls were dealt with, something ranging, then, at a cost per telephone call on the 1-800 line of $715.29 a call. I raise that because I think you cut right to the chase when you give us that quote. I think that's exactly the sort of thing we have to wrestle with to ensure we get the right kind of service to the people who are seriously in need of it, and I appreciate that comment for us.
Ms Bregman: Can I just make one comment, not to disagree with you except to point out that you also have to make sure the service is there. The error made in deinstitutionalization, which was not making sure community services were there when you stopped, is the error that's been made in advocacy. I don't think anybody will object if you can do advocacy better, but 18 months later the money may be allocated but there is still no service available, there is still no abuse prevention program available and the public guardian and trustee has been cut. It weighs both ways, you may be right, but what we've asked and recommended at the end is that we want to see the actual plans, the time frame. That's how we want you to evaluate what you're doing.
Mr Shea: I think there's some merit in what you're saying, yet you also know that just a matter of days ago there was a major conference dealing with this very issue in which this government is trying to forge together the new stakeholders and shareholders in a new policy to help forge new services for those most vulnerable in this province.
The Chair: Thank you on behalf of the committee for the hard work you put into this and for being with us today and sharing your views. We appreciate it very much.
The committee is adjourned until tomorrow afternoon at 3:30.
The committee adjourned at 1816.