Family Alliance Ontario Response to Opportunities and Action

 

 

 

The Family Alliance Ontario is grateful for the occasion to respond to the Ministry of Community and Social Services "Opportunities and Action" document.  We share with the Ministry the value of citizenship for all Ontarians and the strong commitment through the process of transformation to ensure that people with developmental disabilities live lives of full participation and inclusion in all aspects of society. 

 

 Rather than answer each individual question, FAO has used the questions as a guide to cover the areas of importance to both the ministry and families.

 

1. Inclusion and Community Engagement:

 

To be active and included in the real community can only happen when people with disabilities have a valued status in our society.  People are recognized as full citizens when they are the principle decision-makers in their own lives.  Values promoting full citizenship and participation should be embedded in MCSS legislation that governs supports and services.  People need to be described through their strengths and talents, not categorized according to deficits and shortcomings. 

 

FAO believes in the slogan of People First Ontario, "Nothing About Me, Without Me." The service system often gets in the way of inclusion by controlling the lives of people with disabilities, planning for them and making decisions without them.  People should not be controlled by a service system; the system should respond to the people and what they want to do with their lives.  

 

Participation and inclusion happen readily when funding is attached and invested in the person and not in programs or services.  Sitting in a bus traveling from one segregated building to another and looking out the window at life, is not inclusion.  It is assisted segregation.  Participation happens when people are given the right to make their own decisions with the support of family, friends and circles/support networks.  People with developmental disabilities and their family and friends will make mistakes.  This is a risk worth taking.  Many people are bereft of the most ordinary common life experiences because they have been stripped or never were awarded control, power and resources over their own lives.  Trying things out means taking risks.   Finding the right people, listening deeply and honouring the values that drive the person will ensure that one isn't left, stuck in the bus, looking out as everyone else's life goes by.

 

Presently, and in the past, common life experiences for people with developmental disabilities have been ones of poverty, rejection, powerlessness, loss of self-worth, isolation and abuse.  People get used to being mistreated and normalize it.  The expectation of people's lives becomes diminished when they are treated as commodities.  What kind of life can one have if a society says it doesn't want you?  This is what continued segregation offers.  If other people decide people don't need certain things; they won't get them.  Anonymous professionals are the ones making life decisions, not the person with her family and friends. 

 

Transformation means this can change.  The closing of the remaining institutions in Ontario will help eradicate these conditions.  FAO commends MCSS on staying the course on these closings in spite of lawsuits and opposition. 

 

Transformation is an opportunity for imagining better.   It can be better if the focus is on the right things.  A lot of attention is given to quality.  Quality to us means using money wisely.  More money doesn't always mean more quality.  It doesn't mean that things are done better; it may just mean that more mistakes are done more expensively.  Money cannot be the motivator of transformation.   Coherent theories of inclusion that include respect, the person as decision-maker, contribution of family and friends, etc. must be adopted.  Values and value-based leadership are the bedrock. 

 

2. Respite for Caregivers

 

In many communities respite, other than Special Services at Home, is non-existent.  The current system discriminates against families.  Today, people with developmental disabilities, in overwhelming numbers, are living with their families.  Despite families' role as the largest single provider of support to people with disabilities, families are not respected for their role.  Families must be properly funded to do the work they are doing without becoming ill themselves.  Direct funding to families to hire support workers is imperative and a way to alleviate the lives of 1000's of parents so they can continue to provide a loving home for their son and daughter.   Meeting the support needs of people living at home requires that we recognize and meet the support needs of their families.  Choice of respite is meaningless in the current system as respite support, if it exists, has long waiting lists, is usually out of the family home and as such is inaccessible to many families.

 

There cannot be a standardized approach to respite as each families' needs are different and must be approached in an individual way.

 

3. Partnership With Families on Residential Supports

 

FAO supports typical homes in the real community in the same range of choice as other people in Ontario enjoy.  Funding should support styles of living that are valued and promote typical social relationships.  People should be supported to have typical lifestyles and do typical work. Examples of innovative housing are:  co-operative housing, intentional communities, rent-to-own, family home renovations, condominiums, person owning own home.

 

 

Direct funding should be attached to the person so people may move within the province. By funding only the institutional approach of group homes, people are forced to accept these homes in order to receive any form of support.  MCSS could create an environment of innovation by recognizing innovators who are doing good things.  There are many examples of creative housing and support combinations but these do not seem to be valued by the ministry.  Support workers hired directly by families are discriminated unfairly by being denied equal wages, benefits and salary increases given agency staff.  

 

 

4. Transition Across Life Stages

 

Unencumbered, independent planning is the key to good inclusive transitional movement through life.  Planning, with an independent facilitator must be clearly separate from direct service provision.  Planning outside the service system will promote the full participation and citizenship of people.  Planning that includes the generic community offers opportunities for inclusion, relationship building, development of support circles and promotes welcoming generic businesses and recreational opportunities.

 

Transitions occur at many junctures in a person's life.  There is the transition into daycare, into elementary school, into high school, out of high school, into post-secondary institutions, into employment, into one's own home, etc.  At each juncture, independent planning should be available and the opportunity to meet with other parents and people with disabilities who have already experienced transition would be invaluable assets to aid families.  

 

Support family innovation.  Value the person and his family and his circle in all decision-making and planning.  The system presently rewards agencies that stream people to programs.   It's the cookie-cutter approach.  Independent planning will provide an alternative to day programs and groupthink.

 

Seniors must live with people who value them.  The answer is not long-term care beds but again, planning with the individual, in a timely fashion and supporting the person and his family/friends to do this.

 

There are examples of good independent, person-directed planning at the Windsor-Essex Family Network and the Hamilton Family Network.  The planning is done with key players in the person's life such as school educators, support workers, family, friends, business and recreational organizations, and ministry personnel who present information on ODSP and other government programs.  This type of planning is offered across life transitions.  This planning values the person's voice first and is different for each person.  It is intended to build relationships and community connections that lead to desirable outcomes for the person.

 

5. Supports for People with Specialized Needs

 

There is a shortage of doctors and other specialized health personnel across our province.  Within that group are few with any expertise or understanding of people with developmental disabilities.  Medical and clinical professionals should learn about the impact of developmental disability in their training at university and then would be equipped to provide service to this group of citizens.  Qualified personnel should be available in every community in Ontario to have their medical needs met.

 

6. Taxes, Wills, Disability Savings Plans

 

There should be wage parity for support workers hired by families, including benefits and regular cost of living increases.  Families should be able to claim transportation costs when providing transportation for daily activities.

 

Allow a Registered Disability Savings Plan in which tax deductions are provided at the time the money is put into the plan and ensure that any money removed from the plan is tax-free.  Disability Savings Plans could also be used to buy a home with no clawback.  

 

Families should be able to renovate their home to accommodate their adult son or daughter to stay in the family home and claim 50% of the renovations on their income tax.  People with developmental disabilities should be allowed to own their own home without a government penalty on their income.

The ODSP should be increased so people living on their own do not have to live in poverty.

 

Allow families to have parity to agency supports when applying for individualized funding dollars.  It makes no sense that "Tom" is supported by an agency at $55,000 and by mom and dad at $10,000.

 

Separate supports from buildings and encourage families to apply for funds for their sons and daughters to have more typical homes. 

 

 

7. Quality Supports and Services

 

Information is not given to families.  Although the ministry has created access mechanisms there is still no information sharing or disclosure to family networks or other parent-to-parent or disability organizations in Ontario.  Access mechanisms seem to exist to stream people into programs, often without their consent or participation in the planning or decision-making.

 

Information must be widely dispersed to the people who need it.  There should be two-way communication between family networks and access mechanisms.  Access mechanisms exist in isolation from the real community that families are living in and only disclose information to service providers.  This is wrong.  Instead of providing information on programs, funding, etc. access mechanisms behave as gatekeepers.  This breeds distrust in families and suspicion of the ministry.  Open, transparent practices, which include family organizations, should be developed.  Family Alliance Ontario would be very willing, through its 17 Family Networks and many partners, to be a conduit of information to families if an information sharing partnership were developed between FAO and the ministry.  

 

Boards of access mechanisms should be composed of 50% membership of persons with disabilities and families.  No "community" process should be held without person and family active participation.  Persons and their families are directly affected by the system and yet are not included in any system decisions.  People and their families should have on-going participation in planning, reviewing and improving all systems and their features.   The ministry needs to acknowledge the family's role as advocate, support coordinator and support provider.  By withholding information that is valuable to the family, the system is exhibiting it does not value families as decision makers.  What chance do people with developmental disabilities have to exercise their human rights if the system created to aid them treats them as commodities?  The system cannot continue to dismiss families and behave as if it knows best.  The power of professionals has become huge and now professional classes dominate the lives of countless people.  The system must share power with persons and their families.  Again and again we see the service systems full of needs and interests that trump people being served.  People and their families have become afraid of change, they fear reprisals for speaking up.  The system continues to become more complex and uses a rhetoric that baffles people and keeps them in ignorance.

 

There need to be effective processes such as independent appeal mechanisms for people unhappy with the decisions of bureaucracies and agencies.  Research shows that people's vulnerability increases when they go into services; certain environments and circumstances put people more at risk.  There needs to be an Adult Advocacy Office where people can find clear strong advocacy that is based on values.   

 

 

            Summing Up

 

 

The transformation of developmental services can be a catalyst for growth and creativity.  When we look at the past we see a lack of higher expectations for people and a lack of positive life experiences for them as well.  At one time government put its faith in all the wrong places; in buildings, in cookie-cutter programs, in poor communication, in charity models, in segregation, in labeling.  Now there is a new energy fueled by value driven leadership and the desire to share power and control and to struggle together with families.   A commitment to social inclusion has seen improved attitudes in the public around the world.  More and more, people are experiencing life - not off in the van looking out – speeding up not meeting, but being present in the flow with their family and friends and neighbours.  

 

John Lord calls people with developmental disabilities and their families who want inclusion through individualized funding, people telling a "new story".  We are all too familiar with the old one.  The new story can be supported and nurtured by a ministry not afraid to let go of the power and control it holds and instead, lets the person and her family choose their direction.