ABUSE BY MINISTRY

Power dynamics, lack of resources, and the troubled relationship between the Ministry of Community & Social Services and Families of People With Developmental Disabilities

A Brief to the Minister of Community & Social Services and the Premier of Ontario

Our lives begin to end the day we become silent about the things that matter. (Martin Luther King Jr)

Prepared by: Patricia Spindel, Ed.D., President, Spindel & Associates Inc.

Spindel & Associates Inc., November, 2013. www.spindelconsulting.com

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Abuse By Ministry
Preamble: Somewhere along the line, something changed in the Ministry of Community and Social Services (MCSS) with respect to the way families of people with developmental disabilities are treated. Throughout the 1970s and 1980s there was a recognition that governments responsibility towards people who are vulnerable and their families was to work with them to find creative solutions to help individuals to become active and included members in their communities. A Working Partnership: The 1970s and early 1980s Through strong working relationships with what was then the Ontario Association for the Mentally Retarded, that incorporated many family members on its Board and Committees, institutions were closed, family support programs built, and the Special Needs and Special Services at Home (SSAH) Programs were begun. These were programs that were cost shared with the Federal government, and the original intent was that through this cost sharing arrangement, funding would increase consistently each year. That never happened. A Broken Partnership: The 1990s through 2013 The result is thousands of people on waiting lists for services and supports, and others who need assistance not even making it to waiting lists because the Ministry will not keep track of all those who ask for funding, but are not even considered1. Response to a Freedom of Information request, dated December 13, 2012, showed that, with respect to SSAH, the total number of children approved but on a waitlist was 8600. 11,600 were being funded, but no information was provided on whether or not this funding was what had been requested or not. The number of adults approved, but on a waitlist for Passport funding is 3700. 15,000 are being funded, but there is no information on whether or not this funding is what was actually requested.

Correspondence: Cate Parker, FOI Unit, MCSS/MCYS, December 13, 2012.

Perhaps the most troubling part of the FOI response is that when asked how many applications have been received that have not been approved, the response was that the Ministry does not collect this information. Given this, several things become obvious. 12,300 adults and children need and deserve funding, and have been approved for it, but are not getting it. 26,600 adults and children are getting funding, but there is no information about whether or not they are getting the funding they actually need. There is no information about how many people have asked for help and not even gotten to first base, because they were rejected, and the Ministry keeps no numbers of how many are in this situation. There is no way that a Ministry can discharge its responsibility in developing appropriate or effective public policy if it is not even collecting information concerning the needs of the people it is intended to serve. There is no way the public can hold the Ministry accountable for its policy and practices, or absence thereof, when that Ministry will not provide the information for that to occur. The result is that individuals and their families are suffering. Families are developing health problems, there is marital stress, family breakdown, and the heartache of having to place someone in a long term care institution because of a lack of support to maintain them in the community. Numerous press exposes2 have documented that long term care institutions are not safe, that provincial regulations under which they operate cannot be properly enforced with the number of inspectors available3, and that in some cases people with developmental disabilities have been murdered4 by others with serious mental health issues who should also not be in these institutions.
2

Please see Toronto Star, November 17, 2011 Nursing Home Residents Abused http://www.thestar.com/news/canada/2011/11/17/nursing_home_residents_abused.html Toronto Star, February 9, 2013 More than 10,000 Canadians abused annually by fellow nursing home residents http://www.thestar.com/news/gta/2013/02/09/more_than_10000_canadians_abused_annually_by_fellow_nursing_h ome_residents.html CTV News, May 21, 2013. Nursing home abuse incident not isolated say experts. http://www.ctvnews.ca/canada/nursing-home-abuse-incident-not-isolated-say-experts-1.1290010 W5 February 5, 2013 Crisis in care investigation. http://www.ctvnews.ca/w5/w5-a-ground-breaking-nationalnursing-home-abuse-investigation-1.1149144
3

Please see Toronto Star, November 22, 2012 Ontario must step up inspection of nursing homes http://www.thestar.com/opinion/editorials/2012/11/22/ontario_must_step_up_inspection_of_nursing_homes.html
4

Sudbury Star, December 10, 2008 Sisters devastated by brothers beating death in Extendicare York http://www.thesudburystar.com/2008/12/10/sisters-devastated-by-brothers-beating-death-in-extendicare-york

What is happening is unjustifiable institutionalization5 and exposure to possible harm because of neglect by Ministry, and this has been occurring for years6. This is exactly what resulted in the death of Yves Soumelidis in 1982 in the Ark Eden Nursing Home7. An inquest jury found that his death was due to contributing factors of dehydration, malnutrition, and hypothermia. Uproar ensued in the Ontario Legislature8. It appears that the current government is turning the clock back over thirty years with its policy of failing to adequately support individuals, thereby forcing them into these kinds of facilities. Sadly other figures show just how much the Ministry of Community & Social Services is willing to spend on bureaucracy, rather than direct service and support to ease the situation of individuals and families who are struggling. An October 23, 2013 Freedom of Information request yielded data that actual expenditures for Developmental Services Organizations (DSOs) is in excess of $12,000,000.009 DSOs are essentially a layer of bureaucracy between families and the Ministry and one more assessment hoop that families need to jump through before they can obtain any amount of funding for their loved ones if indeed funding is even available. Families have reported that far from making life easier for them, the DSOs have just resulted in more money being spent on bureaucracy without anything having changed for the better for them. If families try to call MCSS staff they are always redirected to the DSOs. Agencies are also being instructed to direct families to the DSOs. Not only that, but families facing the transition from childrens to adult services have to have their son/daughter reassessed, in essence, having to prove that their son or daughter still has the same level of disability once they turn 18. And once in Passport, they need to be re-assessed every five years.
5

See Olmstead: Reclaiming Institutionalized Lives - http://www.ncd.gov/publications/2003/Aug192003

Toronto Star, February 16, 2007. Nowhere else to go: Developmentally disabled adults, some as young as 21 are being moved into nursing homes with people twice their age http://www.thestar.com/life/2007/02/16/nowhere_else_to_go.html
7

The Montreal Gazette, February 18, 1983. Ontario closes nursing home after appalling abuses found.

http://news.google.com/newspapers?nid=1946&dat=19830218&id=KysiAAAAIBAJ&sjid=LaUFAAAAI BAJ&pg=1186,920516
8

See Handard, February 21, 1983 http://www.ontla.on.ca/web/house-proceedings/house_detail.do?Date=1983-0221&Parl=32&Sess=2&locale=en#P77_22297

9

Correspondence: Cate Parker, FOI Unit, MCSS/MCYS, October 23, 2013.

The stress that is placed on families having to deal with an additional layer of bureaucracy in addition to coping with the daily demands of their lives in meeting the needs of individuals with often very complex needs is staggering. Funding Did Not Follow Deinstitutionalization Funding that had been designated for individuals living in the large Schedule 1 and 2 facilities that were being deinstitutionalized in the 1980s was to have followed these individuals into the community. It never did in its entirety10. The result is that transfer payment agencies like associations for community living and other developmental services providers are struggling to retain staff, maintain any degree of quality services, meet the needs of individuals with complex needs, and try to address union contracts with funding that does not stretch far enough. Meanwhile MCSS places ever increasing demands for documentation on them without actually holding them accountable through an effective on-site program of regular inspections. Inspections tend to be complaint driven. In other words, they occur when it is too late. All of these are Ministry created problems, because government failed to develop adequate public policy related to individualized funding or residential services; it did not ensure yearly incremental funding arrangements for SSAH and Passport tied to actual identified needs; and it held back funding that should have gone with individuals as they left the large institutions, thereby underfunding individuals with complex needs reentering the community. The results on what would follow were easily predicted circa 1986 placement breakdowns in group homes and subsequent admission to nursing homes. Reinstitutionalization. Individuals and families suffering, and remaining at risk in the community. In other words this Ministry failed to meet its responsibilities to highly vulnerable people and their families, and consequently thousands of people are suffering needlessly and/or living in unsuitable and possibly dangerous settings in long term care institutions and even jails.

10

Ontario Association for Community Living internal documentation, Spindel, 1984. See also: Mandate for quality: Examining the Use of Public Authority to Redesign Mental Retardation Service Systems: Missing the Mark, 1984. Alan McWhorter & Bruce Kappel.

Smoke, Mirrors, and Divide and Conquer Meanwhile MCSS tied representatives of family organizations up at partnership tables for years in developing new legislation. Nothing has changed for families in the past five years as a result of these consultations. In hindsight they appear to have been a distraction to prevent family organizations from having successfully organized to confront the real issues a complete failure of public policy for individuals with developmental disabilities and their families, and the resulting failure to address the serious underfunding issue. What is worse, is that MCSS staff have successfully pitted families against agencies, suggesting that if families want funding, they should get it from developmental services providers. This is a classic divide and conquer strategy on the part of the Ministry for which too many have fallen. While pitting two groups, neither of whom are funded appropriately, against each other, it keeps peoples attention off the real problem bad public policy, inadequate government funding levels, and a Ministry that has forgotten its role, engages in power politics in the form of real or implied threats and intimidation, and some Ministry employees who are increasingly hostile towards the people they are supposed to be assisting. Imagine what would have been possible had the stakeholders seen through this ploy and stood together to confront a Ministry that was clearly on the wrong track. The Downward Spiral By the 1990s the tide was already starting to turn. Excellent civil servants within MCSS, who understood their role to be public servants, and Ministers who were familiar with the issues, the tragic history of Ontarios treatment of people with developmental disabilities, and who understood that their job was to develop innovative public policy that addressed the needs of individuals and families, gave way to bureaucracy in is worst form. Good public policy and effective service funding and provision were replaced by doublespeak11, and a new breed of Ministry official emerged - one that treated families with contempt and saw them as making unreasonable demands. Ministry staff who had never had to spend even one day caring for individuals with very complex needs, felt themselves in a position to negatively judge families who were seeking help, often through individualized funding approaches.

11

Spindel, P. January, 2007. Doublespeak: The Ontario governments betraya l of people with developmental disabilities. http://www.spindelconsulting.com/Doublespeak.pdf

These were families who did not want their sons and daughters to have to fit the existing service system. They did not want them forced into group homes or long term care institutions. They wanted the service system to be flexible enough to fit their sons and daughters, so that they could live as full citizens in their own homes and communities. They were willing to take responsibility for raising their own children with some assistance from government to provide for their special needs. They were penalized for wanting to take this responsibility, and demonized when they asked for help. As the demand for individualized funding increased, Ministry staff held the line, and senior policy makers and politicians failed to increase funding incrementally year by year (tied to documented needs), to both the SSAH, and later the Passport Program. They also did not invest incrementally in the residential bricks and mortar service system, the funds they had skimmed off with the closure of the institutions12. Funding was haphazard and usually occurred only in response to public pressure. MCSS officials had no corporate memory of the earlier atrocities committed against people with developmental disabilities by their own Ministry. These occurred because of its reliance on large institutions13, and its failure to transfer responsibility for at least 500 children left behind in homes for special care after Walter Williston recommended in 1971 the closure of the provincial hospital schools14, and in 1973 when Robert Welch, the Provincial Secretary for Social Development recommended community living for people with developmental disabilities15. Instead Ministry staff became practiced at refusing families requests for assistance. Having forgotten their role as public servants, they saw themselves as simply guardians of the Ministrys money. Even worse, they saw families as adversaries as they attempted to advocate for their sons and daughters.

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All of this was documented in the June 2012 report by the SSAH/Passport Coalition Social Exclusion? How Government Programs Are Failing Persons With Developmental Disabilities http://www.ssahcoalition.ca/pdf-docs/Social%20Exclusion%20-SSAHPC%20June2012.pdf
13

Toronto Star, September 17, 2013. Huronia institution cemetery a painful reminder of neglect and abuse http://www.thestar.com/news/gta/2013/09/17/former_residents_settle_huronia_lawsuit_for_35m.html
14

See MCSS Archives Walter Williston, 1971 Present Arrangements for the Care and Supervision of Mentally Retarded People in Ontario, A Report for the Minister of Health". http://www.mcss.gov.on.ca/en/dshistory/legislation/1970s.aspx
15

See MCSS Archives - Robert Welch, 1973 Community Living for the Mentally Retarded in Ontario: A New Policy Focus". http://www.mcss.gov.on.ca/en/dshistory/legislation/1970s.aspx

Veiled Threats Some program supervisors and regional directors have created their own fiefdoms, trying to intimidate service providers and families alike with implied threats to their funding if they dare challenge Ministry decisions and requirements. Some Ministry staff refuse to speak with families at all. In many cases their intimidation and ignoring tactics have been successful. Today many service providers and families are afraid to speak up and tell the truth about what is happening to people with developmental disabilities, for fear that they will lose what little funding and resources they have. However, some have shown incredible courage in coming forward to assist in providing information for the drafting of this brief. What follows is a summary of the processes that are preventing the Ministry and families from working together for the greater good of the most vulnerable people in Ontario. Long gone are the days of Ministers like Keith Norton, who created a culture within the Ministry that was respectful of families, that recognized what they contributed to their sons and daughters and to society every day. Gone is that recognition and respect that was once given to families for their commitment and caring. The few MCSS staff who feel for and try to help families must attempt to do so under the radar. This brief is based on the stories told by families, advocates, and agency representatives who had the courage to come forward in spite of fear of retribution by MCSS. It focuses on the implications that arise from these stories rather than the stories themselves in order to protect these individuals from possible retribution. But it can only scratch the surface, and cannot hope to raise all of the issues related to the stories of all the people who are currently suffering under the oppression of a Ministry and a government that seems to no longer care. It is time to right this historic wrong. This Minister has the mandate to do this under the Ontario Ministry of Community & Social Services Act which states: Duties of Minister 6. The Minister may, (a) institute inquiries into and collect information and statistics relating to or affecting any matter for the provision or promotion of community and social services; (b) disseminate from time to time information, in such manner and form as he or she considers suitable, for the promotion of community and social services;
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(c) secure the observance and execution of all Acts and regulations for the administration of which he or she is responsible; and (d) direct any officer of the Ministry or any other person to investigate and inquire into and report to him or her upon any activity, matter, agency, organization, association or institution having for any of its objects or relating to or affecting the social welfare of persons in Ontario and that is not under the jurisdiction of any other ministry of the public service of Ontario. R.S.O. 1990, c. M.20, s. 6. The Ontario Ministry of Community & Social Services Act also states: Grants for persons with a disability 11.1(1) The Minister may from time to time, out of money appropriated by the Legislature, make a grant to or on behalf of a person who has a disability and who is at least sixteen years old, to assist the person in obtaining goods and services that the person requires as a result of the disability. 1993, c. 2, s. 23. THE RECOMMENDATIONS This brief is, therefore, calling on the Minister to address his role: 1. Institute an inquiry into how well both the SSAH and Passport Programs are meeting the needs of individuals with developmental disabilities. 2. Direct the Ministry to collect and disseminate all information related to the SSAH and Passport Programs, including information about how many are applying for funding but not being approved, and how many have applied for funding but are not receiving it at a level that they requested, without individuals having to resort to Freedom of Information requests to obtain it. Make this information readily available on Ministry websites. 3. Ensure the observance of the Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008 specifically with respect to ensuring that regular inspections of direct services take place that have, as their goal, the protection and support of individuals with developmental disabilities and their families, and the prevention of serious incidents, rather than responses to them after the fact. 4. Direct that an investigation occur related to how families are treated by Ministry staff, by DSOs and the staff of transfer payment agencies handling funding requests, that includes under oath testimony by both those being served and those providing services. The goal of the investigation should be to ensure that Ministry
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and transfer payment agency staff understand their roles and are trained to perform them appropriately; that families are being treated with respect; that resources are being distributed equitably and fairly; that where not enough resources are available to address legitimate needs, Ministry staff document and report this and this information is forwarded to the Minister for action at Cabinet; and that appeal procedures are fair and are operating effectively. 5. Review instances where individuals with developmental disabilities are not receiving an appropriate level of care and support sufficient to maintain them in the community and prevent unjustifiable institutionalization, and request that Cabinet intervene to appropriate the resources necessary to ensure that forced institutionalization because of an absence of required funding, services, and resources does not occur. 6. Immediately redirect the 12 million dollars being spent on DSOs into addressing the waiting lists of people approved for SSAH and Passport funding who are not receiving it. THE ISSUES Families who showed the courage to come forward to discuss how they had been treated in seeking the necessary resources and supports for their loved ones should be congratulated. They did so in spite of fear of retaliation from Ministry, and in some cases, DSO, and transfer payment agency staff. Their stories point to significant problems in the way the Ministry of Community & Social Services is handling and responding to the needs that currently exist in this province. There are issues related to its role, its funding priorities, the process of responding to individuals needs, interpersonal communication with families, and its appeal system. Misguided Priorities and Power Dynamics The role of government is to ensure the equitable distribution of resources for the good of society. The specific role of the Ministry of Community & Social Services according to the governments website is promote resilient and inclusive communities by helping people achieve their potential, build independence and improve their quality of life16. Part of this responsibility is to ensure that vulnerable people among us are cared for. One of the values inherent in Canadian society is a belief that it is important to collectively care for those who cannot care for themselves. It is expected that elected politicians and government officials will carry out the will of the Canadian people in this regard. This value is currently being undermined by the beliefs and actions of some
16

Please see http://www.ontario.ca/government/ministries

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Ministry staff with respect to people with developmental disabilities and their families, according to the stories told by the families themselves. Instead of seeing themselves as public servants, whose role it is to attempt to assist individuals, and to creatively problem solve problems, thereby promoting resilience and inclusive communities and helping people achieve their potential, build independence and improve their quality of life some Ministry staff see themselves solely as gatekeepers of the public purse and as roadblocks to individuals and families being able to access the resources that they need. They are undermining the mandate of their own Ministry. One Minister after another, and one Ontario government after another has failed to secure the funding necessary to properly support individuals and families, and has instead been part of a government that squandered millions on gas plant cancellations17, e-health18, ORNGE19 executive salaries and perks, a failed Green Energy policy and feed in tariffs to big wind corporations20, and many other things that have not, in any way, been in the public interest. $675 million, plus $46.2 million, plus plus plus. Meanwhile, people with developmental disabilities and their families have to beg for every pittance they get. What is particularly offensive in light of this are remarks made by the Hon. Ted McMeekin in May of this year, attributing his Ministrys lack of response in the wake of a mother being so desperate that she left her autistic son at a Ministry office, attributing the lack of support to difficult economic conditions21. Apparently conditions were not
17

Ontario Gas Plant Cancellation Costs $675M CBC Report - http://www.cbc.ca/news/canada/toronto/oakvillegas-plant-cancellation-costs-675m-ag-says-1.1930206

18

IT World Canada reports: In September last year, a $46.2 million contract won by CGI Information Systems and Management Consultants Inc.to build an electronic diabetes registry for eHealth Ontario was cancelled over delays. It was reported in the media that registry has become obsolete. http://www.itworldcanada.com/article/3-lessons-learned-by-ehealth-ontariochief/47549
19

The National Post (02/08/12) reported: the most shocking testimony came this week from former chairman Rainer Beltzner, who said he saw documents showing Ornge paid millions in unnecessary fees to an Italian company that sold it a fleet of new helicopters for $144-million. Shortly after, AgustaWestland signed two contracts with Ornge totalling $6.7-million. Where that money went is still a mystery. http://news.nationalpost.com/2012/08/02/hearing-into-orngescandal-ends-with-big-questions-still-unanswered/
Financial Post, (16/05/11) . Ontarios Power Trip: The Failure of the Green Energy Act. http://opinion.financialpost.com/2011/05/16/ontarios-power-trip-the-failure-of-the-green-energy-act/
20 21

CBC News. May 6, 2013. Ontario minister defends funding for developmentally disabled.

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that difficult when the Ontario Liberal government was throwing funds at all of the failed initiatives listed above. When Ministers behave in this way, it sets the tone, and acts as an example for staff of their Ministry. The government should be ashamed of itself for its completely inappropriate priorities. The problem has never been not enough money. It has always been misdirected priorities. Political Inequality Today, in Ontario, it is the vested interests with deep pockets and powerful friends, who can make large campaign contributions and hold and attend expensive fundraisers for elected politicians, who hold sway. Construction companies, drug companies, private medical laboratories, and nursing home corporations, the energy sector, lobbying firms all make significant campaign contributions, and many have the ear of the government when it comes to spending priorities22. Individuals with developmental disabilities and their families have no such influence. Often exhausted, financially, emotionally and physically, just trying to get by while caring for people with significant needs, and without the help to do it, families become distressed, distraught, and desperate. They are then labeled as problems by the Ministry and some transfer payment staff. When they try to fight back, they report being subjected to implied and sometimes direct threats of cuts to their services. Others are completely ignored and told that the program supervisor, or the regional director does not talk to families. If they rock the boat in any way, they could face consequences. What is wrong with this picture? The significance of those who have, and those who do not in this scenario are startling. Those who have financial and political power get the resources that should be going to those who do not. It is time that the Minister, the Premier, and the Ontario Cabinet corrected this very obvious wrong.
http://www.cbc.ca/news/canada/ottawa/ontario-minister-defends-funding-for-developmentally-disabled-1.1377248
22

The Globe and Mail, September 13, 2013. Ellis Don Affair Hasnt Tipped The Balance on Ontario Campaign Finance Reform. See: http://www.theglobeandmail.com/news/politics/ellisdon-affair-hasnt-tipped-the-balance-onontario-campaign-finance-reform/article14597254/

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Non-existence or Inaccessibility of Services and Inflexibility in the Provision of Services and Supports The way the Ministry deals with individuals with developmental disabilities and their families today involves a patchwork of funding and service mechanisms almost impossible for any reasonable person to navigate. There are various funding and service pots spread over two to three Ministries; there are committees that approve or disapprove funding, there are DSOs, there is the Ministry regional offices; there may be some funding in some municipalities; there may be some funding in some transfer payment agencies. Families are forced to play a detective game to find out where there might be some funding, then jump through hoops and bend themselves and their loved ones out of shape in order to fit into slots of funding or support. Rather than funding being available in a streamlined and coherent way, and flexible enough to meet their needs, they are required to be flexible in order to meet the needs of the funder, and to do significant research and networking just to find out where the funding can be found. In some cases, programs and services do not even exist. Some families are being forced to seek help in the United States, at much greater cost, in order to meet the needs of their children. For example there is nothing for people with Prader-Willi syndrome in Ontario. If you want real help, you have to go to Pittsburg. There you will find all manner of rehabilitative and behavioral services. But if you live in Ontario, you cannot access anywhere near that level of resources, and especially not in one place. Any family seeking residential placement for a son or daughter is out of luck. Wait lists for these services are decades long. Most are offered placement in a long term care institution (LTC) irrespective of the age of their loved one. For the first time in a very long time, young people are once again being placed in these institutions because of the severe shortage of alternative community accommodation. Many LTCs prefer not to take these younger people at all. Because of the length of wait lists for residential accommodation and the urgency many parents, especially those who are growing older, are experiencing, there exists something called An Application For Change of Circumstances that can be completed by a family physician. Unfortunately there is little to no guidance to family physicians concerning the content of information required to properly complete the application. Families have reported that when family physicians contact staff at the DSO they are told that they need not write the letter as it would not make any change to [the familys] circumstances.

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In other words, even if families are in dire straits that are documentable by a family doctor, neither the DSO nor MCSS will offer them any assistance. The only answer is a long term care institution. The more significant the disability, the more likely that the person will be institutionalized.23 If someone has a dual diagnosis a mental health issue as well as a developmental disability, they may end up in the prison system because of a lack of appropriate services and supports for them. Even when families try to be helpful, like purchasing homes for their own children and possibly one or two others to share, MCSS will not help them. In this case families are even providing the capital dollars, but MCSS will not assist them. There are parents in their 70s leaving their own homes to stay with their sons and daughters in their apartments in the community because their support dollars do not stretch far enough to maintain them in the community. This often occurs at the expense of their health and well-being. Meanwhile adult sons and daughters with a developmental disability are forced to accept elderly parents living with them for part of the month just so that they can remain in their own apartments. Sometimes these kinds of arrangements can go on for years with no additional assistance made available.24 Even when there are DSO or Ministry staff who want to help, they lack the resources to be able to. The irony is that MCSS has lots of money to fund its Regional Offices where much of what staff do these days is tell people there is no money. MCSS has money to throw at the newly created DSOs that form yet another barrier between MCSS staff and the people they are supposed to be helping, and provide a shield against Freedom of Information requests. The Ministry has money to split the SSAH and Passport programs in two, thereby creating two programs with two bureaucracies when one would suffice, at the same time as they are encouraging community agencies to integrate. But they have no money for families who are often desperate for support. MCSS is also not ensuring that appropriate training is available for front line workers, especially in-home workers, so that they are in a position to help individuals with often complex needs. A silo exists between MCSS and the Ministry of Health and Long Term
23

In 2006 MCSS and the Ministry of Health and Long Term Care even developed a joint Long Term Care Home Access Protocol for Adults With A Developmental Disability to facilitate institutionalization. See: http://www.opadd.on.ca/News/documents/LTCprotocolexternalJuly5_000.pdf
24

Even when families are in extreme need it appears that MCSSs own Considerations For Prioritizing Access are not followed. See: http://www.mcss.gov.on.ca/en/mcss/publications/developmentalServices/passportGuidlines/section2.aspx

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Care when it comes to the provision of nursing support. Support workers are not trained in nursing, and nurses are not trained in using a social model of support. Furthermore many developmental services workers salaries are much lower than those in the health and mental health systems and so highly professional staff are hard to find25. Families are being driven to distraction when trying to get help from government. They write to everyone their MPPs, Cabinet Ministers, the Minister of MCSS and the Premier. They go to the Ombudsman. Generally they are sent right back to the DSOs in an endless loop of no assistance. Some are so desperate that they have hinted to service providers and others, without saying so directly, that if all else fails and they can no longer care for their adult children, that they would take them with them, fearful of what would befall them should the parents die or become disabled themselves. Case in point - the tragic deaths of the Youdell family26. This is a situation that can no longer be tolerated. It needs to be fixed now. No individual or family should be forced to fit a funding or service system. It is the funding and service systems that should contain enough discretionary problem solving capability and resources to allow decisions to be made that support individuals and their families, rather than causing them more stress. No one should be so desperate that they are considering taking their own and their son or daughters life. And no person with a disability should be forced into what is often a dangerous institutional environment in long term care institutions because there is nothing else available for them. Lack of Transparency Most families do not understand the criteria used in the approval process for funding under SSAH and Passport. Specific information on what criteria are used is often not available or is poorly explained. Information is routinely withheld from families by Ministry staff apparently intent on ensuring that they get nowhere. This is completely inappropriate in a taxpayer funded system where public accountability for how public funds are spent and on what should be readily available.

25

See Community Living Ontario - http://www.communitylivingontario.ca/issues/policy-issues/supports-andservices

26

In April of 2005 the family of Janet Youdell, a woman with a severe disability took their own lives and hers in an apparent group suicide. Please see: http://www.mytowncrier.ca/disabled-woman-remembered-as-caring-andindependent.html

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Rudeness and Inappropriate Communication Families report that they are being treated with contempt by Ministry and some DSO or transfer payment agency staff - when they will talk to them at all. This has taken the form of rudeness, veiled threats, and discouragement from proceeding with their attempts to get the resources they need. Information is withheld from them some have to file FOI requests to even access the information the Ministry is holding about them. They are sometimes not told about information meeting locations when new forms are required. Some feel that DSO or Ministry staff treat them like criminals if they make an error on a funding application, and assume the worst, and that families are trying to pull a fast one if there is an anomaly on an expense form. One barrier after another is erected by some Ministry, DSO, and agency staff to prevent families from getting what they need. It is clear to them that they are simply being seen as problematic, when all they want is to get some help. This has created a situation where some families, distressed and exhausted, have become highly combative. But there is no recognition that this has largely been a Ministry created problem. When people are routinely frustrated, insulted, ignored, and mistreated they are bound to respond with hostility. At the most senior levels, the Ministry needs to begin to re-examine its role, and start to see itself once again, as a servant of the public, rather than believing that the public should be there to serve the agenda of the Ministry. The Minister needs to end the abuse of families by officials of his own Ministry and set an example himself. A Failure of the Appeal System Families have generally not even been apprised of an appeal system for SSAH and Passport, and many of those who have, have been told by Ministry, DSO, or transfer payment agency staff that they would be wasting their time to use it. Families report that there exists a three levels of appeal system, but are told they can go to appeal but the decision will remain the same. Families who are unwilling to give up, end up incurring the cost of a lawyer to assist them. All of this points to an utterly unworkable system of appeal that would not withstand court challenges.

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Summary This brief has outlined the major problems identified by families of people with developmental disabilities in their dealings with both transfer payment agencies, DSOs, and with MCSS officials. It shows the often desperate situations in which these families find themselves, coupled with a non-response or worse by the Ministry. It identifies the role confusion now so prevalent in this Ministry and in government as a whole the lost notion that it is there to serve the people, not the other way around. It has shown that MCSSs relationship with families is broken at every level. Legislation gives the Minister the power to fix this problem. This brief calls on the Minister to do so now, with the support of the Premier, before more tragedies occur.

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