More Letters - February 2007
Here are some letters that families have written to the Editor of the Toronto Star in response to the article "Nowhere else to go" by Trish Crawford, published on February 16th, 2007.
Families are asking for another way
Letter to the Editor:
Thank you for this piece of investigative reporting by Trish Crawford. The Protocol on placing people with developmental disabilities in long term care centres has created great fear and anxiety among families in Ontario. The article speaks to a desire for more group homes to prevent placement in nursing homes. This is not the only choice for many families. The 'boomers' children have been the first to experience inclusive lives in school and community and many fully intend to continue their active lives of participation in the mainstream.
Many families are asking for another way. It's called individualized or direct funding and has been available to people with physical disabilities exclusively in the past. Families would like that extended to people with developmental disabilities as well. When funding is attached to a person and not an institution or placement, people can choose the way they wish to live. Funding attached to a person enables that person to hire the support workers they need to make participation possible. It eliminates the need to find a "place" for people. People will find their own place which may be their own apartment, in a cooperative, with a relative, etc.
The last 50 years have been a long struggle of emancipation for people with developmental disabilities in Ontario. The next step on the road to citizenship is to have the choice and control over how and where to live. Moving people from institution to institution is not the way to get there.
Jan Burke-Gaffney
President, Family Alliance Ontario
A better approach
To the Editor:
I am haunted by memories of the nursing homes my husband and I naively visited in the early 80's. Our pediatrician had suggested we should consider choosing one for our daughter Nancy aged 5, whose physical and developmental disabilities were deemed to be too challenging. Our gut reaction to these distant, isolating, loveless settings, which included the notorious Ark Eden, required us to develop a different approach to "sharing her care".
Nancy grew up with her three younger brothers, and spent "sleepovers" two nights each week through her school years, in a community co-op apartment suite, an innovative program organized by what is now New Visions, providing residential support for children and/or youth. We needed help, but we also wanted Nancy to have a regular childhood, with her individuality respected. Special Services At Home, the 25 year old direct funding program of the Ministry of Community and Social Services was our introduction to managing a small amount of requested funds and choosing some support personnel for Nancy.
Today at 31, Nancy is a fully participating citizen with a number of valued roles in the community, which are sources of mutually beneficial relationships, and learning opportunities. Individualized support, based on a plan developed in conjunction with her personal network of family, friends and supporters, with a personal budget funded through OPTIONS of Family Service Association, enables a young woman who we expect will always be dependent, for all aspects of her personal care and mobility, to live the life we think she would choose.
A medical model of care, as offered in long term care centres, is the wrong approach. Families need access to independent facilitators who have the skills and the commitment to help us dream about the possibilities, identify, secure and manage resources, including financial, social and community, which will ensure that the individuals we care about so deeply, can live their own meaningful lives among us all.
Christy Barber, Toronto
Director, Family Alliance Ontario
Member, Individualized Funding Coalition For Ontario
www.individualizedfunding.ca
What parent dreams of a nursing home for their child's future?
Letter to the Editor:
I am the parent of a beautiful young man, Gabriel. He is gifted with emotional understanding, deep listening ability, and perfect comic timing. At 30, he dreams of leaving home to live in his own apartment downtown, going to concerts and cafes with friends and riding on the subway. I want the same things for my son that every parent wants for their children: I want him to develop to his full potential and have his contribution be valued by others. I want him to have meaningful relationships, enough money to live on and safe and secure housing. I want him to be happy.
What parent dreams of a nursing home for their child's future? Apparently I am expected to do that; in fact the government is invested in changing my mind about Gabe's future. Gabe needs support and assistance with every aspect of daily living. In a nursing home where people get 2.5 hrs per day of personal assistance, Gabe will be restrained to prevent him from running into other vulnerable or frail people in his wheelchair, and I have seen him tied up and locked up in segregated programs in the past. I believe he would die without the friendship, stimulation, love and support that he is used to receiving.
Though the government is calling life in a nursing home 'living in the community', they still don't stand behind real support for inclusion of people with disabilities in society. They continually waste their resources as well as mine by waging a war of resistance against Gabe's citizenship. Instead, they could respect and value his life plan as a creative, realistic and inexpensive model of support.
It is outrageous that such a protocol could even be considered and it is shameful that it is still considered acceptable to isolate our most vulnerable citizens.
Martha Eleen
We all deserve better
Letter to the Editor:
That young people with developmental and other disabilities are being forced into Ontario nursing homes is proof that we are going backwards as a province. Trish Crawford's thorough February 16th investigation of this tragedy has shown Star readers the faces and told the stories of some of the people harmed by this misguided government policy.
I have worked for 40 years to assist people with disabilities and their families and these issues are very close to my heart. Three years ago this week, our son Matthew Dolmage died, at the age of 29 - in his own home - loved, admired and missed deeply by his family, friends and community. He had only lived in Toronto for 2 years, but was honoured by the Mayor and Toronto Council for all of his contributions as a citizen.
Matthew's greatest obstacle was never his disability, but the system's inflexibility. Every year, both the Ministry of Health and Community and Social Services run out of money to keep people with disabilities living with their families, but spend many times more per person in segregated services. Ontario has still not adopted a policy of Individualized Funding - even though they granted it to Matthew and others 10 years ago. This meant Matthew could hire the people he wanted to support him - flexibly and respectfully - to live an active life, and to augment the daily care of his family - all at much less cost than either a group or nursing 'home'.
Please continue the Star's investigation. Help get these people out of nursing homes. Encourage other families by researching creative supports that improve lives and save tax dollars. Expanding opportunities for people with disabilities and their families is common sense; what's missing is the political will.
We all deserve better.
Sincerely,
Marilyn Dolmage
Individualized funding is the only way
Thank you to Trish Crawford for exposing the travesty that is now occurring every day for young people with developmental disabilities and their families, as they have nightmares that is what they have to look forward to.
Our son, Jordan, is almost 21 years old. Ten years ago, we had high hopes for a good future for him, because we personally knew families who were able to convince some people in the Ministry of Community and Social Services that direct or individualized funding was the only way to ensure that their sons and daughters could live safe, happy, inclusive and ordinary lives as citizens in their communities. These families continue to prove that not only is individualized funding a financially viable alternative (i.e does not cost more), but it leads to the kind of life that we all wish for each of our children. Sadly, we also know that only a small number of people live this way, as government continues to put their trust and dollars into institutions instead of families.
We took Jordan out of an abysmal high school situation two years ago because we wanted him to have a life. Contrary to popular misconception, well over 85% of students with developmental disabilities spend most or all of their high school days segregated and isolated from their "able-bodied" peers, as if school needs prepare them for that same inevitable fate when they leave school. They are deemed to need too much support (i.e. cost too much) to ever live "independently". Everyone knows that independence does not mean doing it all yourself… it means being able to make your own choices.
After reading Trish's article, one might wonder if the Ministry of Education, Ministry of Community and Social Services, and Ministry of Health had this long term plan in mind, and they are all working together, preparing young people with developmental disabilities to leave school for institutional, tragic, lonely, yet "cost-effective" lives that are directly opposite to what many families have spent years advocating for.
We choose somewhere else to go… it is called our community.
Janice Strickland
Young people being forced to live in nursing homes
Letter to the Editor:
Kudos to Life Writer Trish Crawford for her very honest and respectful accounting of the serious plight of Ontario families with loved ones with disabilities under 65 being forced to live in nursing homes (or at risk of a nursing home placement) due to the government's archaic and shocking MCSS and MOHLTC "Access Protocol For Adults With A Developmental Disability" and other documents that have been discovered that promote a similar direction that leads disabled adults --some as young as 18 -- to a nowhere place.
People say a picture speaks a thousand words and quite clearly this is the case in "Nowhere else to go." Through engaging photos that capture the sheer joy and meaning of belonging, along with the stories of families who have bravely come forward to speak, Crawford's story sends out a loud and clear message to everyone.
Minister Meilleur, quite frankly, it's not good enough that you are "reviewing the protocol" that has been sending adults with a developmental disability into long-term care facilities and it's certainly not acceptable that you plan for the agreement to be "reworked."
Enough is enough. It's about time that the Access Protocol is rescinded once and for all. Stop using long term care facilities as dumping grounds. What's needed is a person-directed planning process with independent planning and facilitation within a community development approach. You know that direct individualized funding and supports are in fact already available to thousands in Ontario through the MCSS Special Services at Home Program and more sporadically through small individualized funding projects in some areas. And incredible as it sounds, you know that individualized funding does not cost the government any more money than it is already spending.
The transformation of developmental services is not rocket science. There is a way to fund and support people with dignity and give them choice and control over their lives. The only thing needed now is the will. Families have it. Minister Meilleur, do you?
Sincerely submitted by,
Janis Jaffe-White
Coordinator, Toronto Family Network
Systemic injustice: No one's life should be defined in terms of "placement"
To the Editor:
We would like to thank The Star for its February 16th. investigative report: Nowhere Else to Go. It is such a tragedy that young people with developmental disabilities have been forced into Ontario nursing homes.
Star writer Trish Crawford has uncovered the systemic injustice, but also reveals how easily this misguided government policy could be resolved. Nursing homes and institutions are not only unfulfilling and potentially dangerous but they also cost taxpayers more. Money needs to be redirected to support people to remain with their families and to live in their own homes. They deserve better; we all do.
No one's life should be defined in terms of "placement" - either in nursing home "beds" or group home "spaces". Some people with physical and other disabilities already receive direct and individualized funding. Our communities benefit from their full participation and contributions. If you don't love someone with a disability now, chances are you will...
Downtown Toronto's Church of the Holy Trinity endeavours to welcome, accommodate and celebrate people of ALL abilities. Our Social Justice Committee will be working with Family Alliance Ontario to free people from institutions of all kinds.
Please continue to investigate and call for creative community supports.
Sincerely,
Bob Smyth, Chair
Social Justice Committee at The Church of the Holy Trinity
The right to choose where to live
I am writing this letter in response to the articles you have published about individuals with disabilities being placed in Nursing homes to live, or rather, should I say "waiting to live".
I am extremely concerned that this pattern is emerging, and wonder why, in this day and age, people with disabilities are still so marginalized.
Community Living Agencies have a new campaign where their motto is "Kids Belong Together".
The Ministry of Education has published a document called "Education for All", whose mandate is to support the inclusion of all students, regardless of disability.
The Human Rights Commission has published a document called "Barrier Free Access to Education", and speaks about Inclusive Design.
Does this all fall by the wayside when an individual reaches a certain age? Are we to accept that inclusion is just for individuals while they are in school?
It seems to me that if Individualized Funding was available to individuals with disabilities, it would never reach the point that it has with Karen, who at the age of 51 years of age, has been sent to live in a Nursing Home! What happened to "Belonging Together"? What happened to Karen's right to choose where she will live, and with whom?
Until the government follows through on their promise for transformation, and makes Individualized Funding available to Karen, she will be stuck in limbo - waiting to live.
Jackie Mathieu
The time for change is now
Letter to the Editor
Many thanks, to Trish Crawford for her reflections about the institutionalization and re-institutionalization of people with developmental disabilities in the Province of Ontario.
The title, Nowhere else to go, so aptly describes the current state of affairs. Long-term care would NOT be the first choice for many people who have disabilities if there was any other real authentic choice to make.
Truth be told, the 1600 plus people with developmental disabilities in long-term care represent the tip of the iceberg. With more than 2500 additional people with various other disabilities under the age of 65 living in long-term care facilities in Ontario the total figure surpasses 4,000.
Can we accept as Ontarians that people as young as 18 years old are living in long-term care facilities and getting on buses to attend their high school, only to return at the end of the day? Can we live with the fact that people feel incarcerated -- not for reasons of crime -- but for just simply being who they are - someone with a different ability than you or I? We must work together to find a way for those who would choose so, to get free to live their life of choice in community.
Today is our daughter's birthday. She is 26 years old. She has a developmental disability, lives her days in a wheel chair and has complex health-care needs. She is a candidate for long-term care. Thankfully to date she has had enough individualized funding and individualized supports to remain home and live a full life. This is not the reality for all. Even with those supports, our family can be counted among those who are living with the horror that some day this may be the ultimate reality for our sons, daughters, sisters, brothers and friends who are living with disabilities.
Many of us know family members with developmental disabilities in long term care that were restrained because staff in such facilities just cannot be everywhere. We have heard when people have died while being restrained or under other circumstances and we have cried together about such things.
We understand that staff are stretched and doing the best job that they can. Their experience is with people who are frail and elderly - not people who have a disability and would really like to live their life to the fullest with the right supports. How hard it must be for long term care staff to watch younger people shrivel and loose hope before their very eyes; or others pacing and frustrated because their needs cannot be met, because as one of my colleagues with a disability says: "they are just left to rot and do nothing."
Long-term care is not the answer.
Changing the current reality will require many Ontarians to rise up: everyday citizens, paid staffers, families who are main caregivers, people with disabilities themselves, our neighbours and friends. We must all rise up and say to our MPPs -- Enough Already!
Let's join together and ask government to start offering a solution to this huge dilemma. A two-step process is all that is needed -- a positive process that both the Ministry of Health and Long Term Care and the Ministry of Community and Social Services could collaborate on.
First, government could provide authentic independent planning support to anyone with a developmental disability, no matter what the age, and to those with other disabling conditions that are under the age of 65 who are currently living in long-term care facilities.
Second, during the planning process where it is clear that there is a desire for someone to leave long-term care than that person could be offered individualized funding to purchase the supports of their choice in community. Anyone who would choose to have a life in community as a citizen of this province with adequate and appropriate supports needs to be given that alternative. There are many who know a great deal about individualized funding and excellent independent third-party planning practices in Ontario. It can be done.
It is time to catch up with other policies, programs and legislation that exists in Ontario and in Canada. The Charter of Rights and Freedoms guarantees basic rights and freedoms for people in this country - freedoms that do not add up to the incarceration of people with disabilities. In Unison, a document adopted by all the provinces and the federal government in the late 90's stresses the need for individualized supports and portability of supports. The Accessibility for Ontarians with Disabilities Act recognizes the need for accommodations and supports for people to participate as citizens . The Ministry of Municipal Affairs and Housing has started to offer funding programs to ensure affordable and accessible housing can be developed in a variety of ways for people with disabilities and others who live below the poverty line. CMHC offers funds to renovate and create affordable housing in one's home or the family home.
There are families who are willing, with the right supports, to assist in supporting their loved one in their homes. And where no family exists there are examples of people living successfully in community with the right supports and connections to friends and others. Given all that, why are 4000 people with disabilities living in long-term care facilities in Ontario in the year 2007?
The two Ministries who are responsible to provide supports for people who are vulnerable, including those with disabilities, have not found their way to enact policy and entrench in practice a broad enough approach to individualized funding and individualized supports so that people can live where they want, with who they want and hire the supports they need to do so. It is time for the Ministry of Health and Long Term Care and the Ministry of Community and Social Services to make this happen. It is time to build broader, more expansive individualized funding and individualized support programs in this province. The programs that currently exist have not been expansive enough to halt the shift into long term care facilities. They have not been expansive enough to halt the exhaustion family caregivers experience when supports are limited.
Lives have been lost, more are at stake. Let's not miss out on any more contributions by our fellow citizens. Let's not leave people who need support out of the mainstream for they have much to give and teach to the rest of us. In a split second any of us could find ourselves disabled and ultimately living in a long-term care facility. As some would say… "but there for the grace of God go I."
The time for change is now.
Michelle Friesen, Parent
Lead Coordinator, Windsor Essex Family Network
Co-Chairperson, Individualized Funding Coalition for Ontario
