The Writing is on the Wall

It is difficult to know where to start sometimes. There are so many concerns we must address and deal with daily -- like a harrowing nightmare that won’t go away. These are ongoing, crucial issues that will not disappear until they are tested, challenged, questioned and then refused. Ultimately, many of these issues must be changed and shaped around individuals with disabilities to better meet their ever-changing needs within our communities. Substandard services are no longer acceptable to most of us.

I am the proud mother of and advocate for my daughter, Mallory, who has cerebral palsy resulting in physical, visual and intellectual disabilities. Because Mallory cannot speak out in words for her own rights, I am her voice. It is my responsibility to speak out on Mallory’s behalf, to ask the questions and challenge the system that holds power over families like mine; that is, the people who struggle every day to hang on to the necessary supports to keep our family units functional and healthy.

A large portion of the disability community do speak out for themselves. My daughter is in the vulnerable silent minority. Her voice, through me, must still be heard. Those who do not have an advocate to speak on their behalf get lost in the shuffle.

Respite needs, in-home supports, early intervention, quality education, recreation opportunities and medical supply needs can overwhelm families, especially if they do not have a support network around them. Having to deal with "professionals" from the birth of their child -- doctors, speech therapists, occupational therapists, physical therapists -- will eventually take its toll on any parent. A support network of other families, friends and advocates can provide opportunities for emotional and physical support and sharing of concerns, knowledge, strength and encouragement. Families who do not have this opportunity to link and network with other families often give up from sheer exhaustion and feeling so alone.

Over the last three years, Nova Scotia has had its share of issues regarding the future of the disability community. One thing we must all recognize is that the government comes with its own agenda, no matter what various lobby groups are advocating for. Yet, with a cohesive, collective voice, we can influence this agenda, bend it and shape it to fit the needs of our children.

It is time we told our government in no uncertain terms that we are tired of the ad hoc, uncaring and unrealistic approach they have taken in the past to support families and individuals who have been labelled as having a disability.

Not everyone is going to agree totally with everyone else all the time. We can agree to disagree. We can learn and inform ourselves for our children. Through no fault of their own, some parents do not even know where to begin. Community Services does not have a yellow brick road leading to information about all available services. That is why it is imperative that parents begin networking with each other -- whether we agree with each other’s viewpoints is irrelevant when it comes to seeking information for the well-being of our children.

There are so many questions that families ask. What is an IEP (Individual Education Plan) and its purpose? What are the roles of the teacher, resource teacher, and teacher assistant? Where are good examples of integrating children with significantly different needs? How does this child truly participate with her peers? Who initiates a "Circle of Friends" in your community? How can this activity be advantageous to your child? What summer recreation opportunities and programs are available? Who do you call within Community Services to answer questions about your specific needs? Do you qualify for the In-Home Support Program?

These are questions that I hear frequently and live and deal with daily, as many other families do. We need to help one another. Between all of us, we do have the answers from our many experiences.

We all want what is best for our children. We want them to grow up healthy and happy, to be respected for who they are, to be productive, challenged and accepted, to participate, to love and be loved.

The barriers families face in providing support to family members are rooted in public policies that affect all aspects of our daily life. Public policies are decisions made by government which decide many matters: whether families qualify for funding for support workers and respite options; why some families qualify and others do not; and who gains admission into training programs in education and the workplace. Public policy determines which people get what labels as well as their eligibility for income, goods and services that are attached to these labels.

It is through public policy that power is granted to certain individuals -- government officials, providers of human services, school board officials and vocational counsellors -- to make decisions about the lives of our children. Policy articulates principles, mandates authority, specifies a delivery mechanism and establishes collaboration with and among interest groups.

Public policy determines the kinds of supports to which individuals are entitled, the ways in which supports will be provided or withheld, and where and when they will be provided. In short, public policy can often dictate the quality of life experienced by people with disabilities.

We need the government to provide us with an effective, responsive, comprehensive and coordinated system of services that will meet the economic and social development of all Canadians. We need long-term strategies and commitment for inter-ministry reform of children’s services to support the well-being of families and healthy development of children.

We recognize that present generic services and resources can be used where available, and also that new support services will need to be developed in many communities. Families should be helping families to reach these goals rather than battling against each other. We must work together to oversee the realignment of existing services and supports in order to improve service delivery for our children. The movement to community-based supports and services in all aspects has begun, and this will happen with or without our input. The writing is on the wall.

One advantage that we have in Nova Scotia is the report prepared by the Minister’s Advisory Committee on Services to Children with a Mental Handicap. The recommendations in this report can only improve the lives of many children with disabilities. And if our children’s needs are met, then our families’ needs will also be met.

I do not suggest that everything will fall magically into place. Parents who are challenged by a child born with differing needs will forever face battles of one kind or another -- it comes with the job description, fair or not. Yet, this is our opportunity to influence public policy. We must urge our government to take a leadership role and act on the recommendations in this report.

Families have been left in jeopardy for too long and we need our faith restored in the system. We must remind our government that Nova Scotia is not the first province to phase out institutions, so we have much to learn from. We must remind families and other stakeholders that there is a wealth of information and resources available to us through various agencies and organizations.

One such organization is Integration Action, which, in addition its national scope, includes a local group of parents who are actively involved in advocating for the rights of our children within the public school system. The Canadian Association for Community Living is another parent-driven national and international organization which makes available to us documented reports, research and information.

On January 31, the federal minister of Human Resources Development announced a comprehensive social security review in this country. For many people labelled with a disability, the results from this Social Security Review will directly affect and influence their income, education, housing, employment and leisure time and activities.

The first draft of this review has been released. I encourage all stakeholders -- families, self-advocates and organizations -- to contact their Member of Parliament and request a copy. This is our opportunity to influence public policy reform. If we do not have input into this process now, we may live with regret for years to come.

It is time for Nova Scotia to reach out for help and take a stand. The security and future of people with disabilities depend on it. Family members and self-advocates must remain positive, confident, informed and involved, because we can and will make a difference.

(Barb Horner is a member of the Family Support Network of Nova Scotia.)