Unshippable

When you make a promise, you don’t break it. When we had our children, we promised to love and protect them forever. When we learned they had a disability, that promise didn’t change.

As part of the UN Convention on the Rights of Persons with Disabilities, the Government of Canada has promised to allow adults with disabilities the choice of where and with whom they want to live. They signed an agreement on behalf of all citizens. In Ontario, they are breaking that promise and that means our children risk being shipped away.

The Solution
There is a relatively simple solution to a complex human rights and social justice issue.

If the provincial government changes its funding model to allow individualized funding for residential supports, it will give adults with developmental disabilities, with guidance from their families, the choice of where and with whom to live.

Not only is this the right thing to do, it is a more cost-effective and sustainable model that opens the doors for innovative new residential support systems. Families deserve the opportunity to proactively plan for their adult children and to work to avert decisions made in response to crisis and urgency. Our adult children have the right to funding that allows them a voice and the choice in determining how they want to live.

Living without choice, isn’t really living.

What is going on?

Prior to the spring election 2014, the Liberal Government of Ontario announced a proposal to spend $810 million over the next three years to address the backlog of more than 12,000 adults with developmental disabilities who are waiting for residential funding. Some have been waiting more than 20 years.

There is no funding to plan for a respectful transition from family home and home of choice in the community. This means more than 1,450 Ontario parents over the age of 70 are still providing primary care to their adult child.

The funding must address the current reality that when adults with developmental disabilities are ready to leave home, or lose their parents and caregivers to illness or death, they are put on a ‘crisis list’.

This means that they will very likely be shipped away from their home communities with no choice, no voice and no regard to the lives they leave behind.

Who believes it is okay to let adults with developmental disabilities sit on waitlists until they go into crisis? Who agrees the solution to this crisis is to ship these adults far away from their home communities - often into unsuitable environments such as long-term care facilities?

Who are we?

We are concerned families, friends, supporters and community partners who are actively trying to improve the system in order to include direct funding to individuals with developmental disabilities as a choice for residential support.

We:

  • Believe in a future where adults with developmental disabilities have the choice of where, with whom and how to live, which is with their friends, with their families, in their communities.
  • Want our government to acknowledge that individual choice is central to a person’s dignity.
  • Insist our government view individuals with developmental disabilities as ‘partners in decision making’. They want to have a say in their future.
  • Expect our government to value adults with developmental disabilities as they see themselves -- contributing members of their communities.

We want to partner with the government, service agencies, communities and families.

We know our vision of the future is different from the reality today. The work of the Ontario Developmental Services Housing Task Force is a good first step but with a waiting list of more than 14,000 adults we believe this province must move further and faster to develop new solutions that offer families more choice. We do not want any family to be left without the ability to plan for the future. And we don't want any adult with developmental disabilities to be vulnerable and "shippable" away from their community.

Open Letter

An Open Letter to The Honourable Helena Jaczek, Minister, Community and Social Services

July 7, 2014

Dear Dr. Jaczek,

Welcome to your new position as Minister of Community and Social Services. Your appointment comes at a time when, as expressed by your predecessor Minister Ted McMeekin, the Liberal Government has the “vision for Developmental Services in Ontario to see people with developmental disabilities participating as fully as possible in their communities. Direct funding is an important part of the support that people and families need to achieve the goal of inclusion.”

You have personally expressed the following regarding the pre-election announcement of $810 million for Developmental Services. “This is excellent news for people with developmental disabilities and their families here in Oak Ridges - Markham. Eliminating the waitlist for Special Services at Home and the Passport Program shows this government’s commitment to supporting families.”

Minister Jaczek, aging families with members with developmental disabilities are currently in crisis, or fast approaching that state. Part of the government’s vision for the transformation of developmental services, is to eliminate the current waitlist for the Passport Program for adults in four years and to provide support for urgent residential needs for approximately 1,400 people.

These goals rely on Provincial Legislation that is restrictive in the residential options outlined within the legislation.

We need to move innovative and cost efficient ways– beyond Supported Individualized Living (SIL), Group Residential Housing (GH) and Home-ownership (HO) options.

To quote Patricia Spindel, in her document:* ABUSE BY MINISTRY, “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.”

You, as the Minister, hold the power to fix a restrictive and broken system which has left more than 12 000 individuals with developmental disabilities without residential supports and housing options.

Please promptly review the current restrictive Provincial Legislation related to residential options for people with developmental disabilities and enact legislative changes that will allow for a more flexible approach.

Please move forward immediately to expand direct funding to individuals to allow them choice to select the housing option and the support to live in that housing option that best suits them.

Please work with families and community partners to promote and support innovative partnerships, such as the Dundas Living Centre model and countless others, that lead to shared community living solutions and cost efficiencies that help address growing service needs.

Yours sincerely,
The families and caregivers of individuals with developmental disabilities
Hamilton Area

* Spindel, P. November, 2013. ABUSE BY MINISTRY: Power dynamics, lack of resources, and the troubled relationship between the Ministry of Community and Social Services and Families of People with Developmental Disabilities. A Brief to the Minister of Community and Social Services and the Premier of Ontario

Know more, do more

  • 25,000 children and adults with a developmental disability are on wait lists for support.
  • 14,000 adults with developmental disabilities are waiting for a place to live according to the "2014 Value for Money" audit completed by the Office of the Auditor General of Ontario. How many more people are not on the wait list?
  • 1,400 – In July 2014, the Ministry of Community and Social Services announced urgent residential support for 1,400 people. What will happen to the remaining 12,600 and those who are not yet on any wait list?
  • 23,000 adults with developmental disabilities have asked for help with respite care. In 2012-2013, only 225 respite beds were available. How are parents and caregivers coping?
  • $810 Million – The current Ministry of Community and Social Services’ planning includes $810 million over three years for services and support for people with developmental disabilities but $0 are allocated directly to those individuals to help them transition out of their family homes into homes of their choosing when they are ready or need to move. Why are adults with developmental disabilities not treated as respectfully as the individuals making the decisions that affect their lives?
  • $3-million - the amount allocated to the Ontario Developmental Services Housing Task Force to address "innovative ideas" that emerge from the recent Request for Proposals process. How many innovative ideas will $3-million fund and for how long?

  • 1,450 – the number of Ontario parents over the age of 70 who are still the main caregivers for their adult children with developmental disabilities. This is the first generation of parents to care for their children in the family home following the closure of large, impersonal residential institutions. Will their children have a choice on where and with whom they will live when the family home is no longer an option?

It is critical for our government to implement a model of direct funding for individuals and their families to allow for full choice in decisions about where, how and with whom to live.

Our government must work in partnership with individuals, families and communities to support innovative, cost effective and sustainable options for residential support.

Our government must move from crisis response to models of prevention in partnership with families and communities to ensure adults with developmental disabilities have a VOICE and a CHOICE in determining their lives.

What you can do

  • Talk to your family, friends, neighbours, work peers, special interest groups and networks. Tell them what Unshippable is about. Ask them to reach out to others to share the concerns and support solutions that offer CHOICE and a VOICE for adults with developmental disabilities.

    Use social media to reach out:

    • On your website add a ‘call to action’
    • Twitter: follow @unshippable, use and retweet tweets using the hashtag #unshippable and #ONpoli (pundits and policy makers follow this)
    • "Like" the Unshippable Facebook page, click "Sign Up" to sign our petition and to Share Your Story, comment, post messages, ask others to share
  • Send a Letter to the Editor of your local newspaper and encourage them to cover the stories of individuals with developmental disabilities, their families and caregivers as well as the need for more CHOICE in funding residential options.
  • Contact your MPP and their offices to share the case for individualized funding for residential supports and services for adults with developmental disabilities.
  • Be heard at Queen’s Park and on Parliament Hill – click on Change.org below to add your name to our petition for CHOICE.

    Share Your Story – click on the button below.