Last month’s column in the St. Albert Gazette, I shared some of the challenges that parents of children with disabilities face as advocates for their children. As one of those parents, I am thankful for the healthcare system that has supported him since his birth. I am thankful for the exceptional medical attention he has received for the last ten years. I am thankful for an educational system that tries to meet his needs, and for non-profit organizations that fill in some of the gaps.
My son will have challenges for the rest of his life. He will be handicapped in some areas, while talented in other areas. Many families in the province deal with the realities of growing children who will one day have to face life as an adult with disabilities. This is a life of hard work, enormous reward, and sometimes painful disappointment.
The qualities of positively involved parents include a realistic understanding of their child’s abilities, the wisdom to know when to curb, when to encourage, and when to correct their child’s talents. They investigate the resources available to them, and actively promote their child’s participation in any activity that increases their growth as a whole person.
But when a parent of a child with disabilities exercises these same strengths of resourcefulness and endorsement, they are sometimes seen as weak, pitiful, self-serving, unrealistic or overbearing. They are told that they need to “settle” for what can come to them, and they should be careful not to ask for too much.
As their children age, they will become adults who have often been conditioned to believing that they are not good enough to participate in the regular facets of life. Sometimes, adults with disabilities simply give up, and their contribution is sadly lost. They become a drain on society, rather than participating in and improving it.
The Alberta Government offers financial support to families with children with disabilities. The “Family Support for Children with Disabilities” is a family centered financial aid program for specific extenuating costs related to the child’s disabilities.
In order to acquire these supports, the family must apply and establish if they are qualified. They must then consider what supports they may be eligible for, then they must work with their government intake worker to see if, in fact, they do qualify. Often, because the qualifications hold some ambiguity, the family needs to work at selling themselves to the worker, trying to convince him or her that their life with this child is significantly difficult. The structure of the program leans its way towards parents feeling it is necessary to exaggerate their child’s condition to “prove” they need help. Once the qualifying supports are established, a contract is drawn between FSCD and family, that allows a maximum amount of annual support in any given area. This contract then closes, and an entirely new contract is drawn each year.
My son has been supported for nine years, and every year, I feel like I’m being approached with suspicion. It’s like their first attitude towards me is to mistrust me, even though I’ve demonstrated year after year after year that he needs help. It is exhausting to come to the table every year, and have to defend my position. Sometimes I feel that FSCD isn’t a support, but rather a social loan shark. I feel like I need to plead for financial assistance, and I almost always feel mistrusted in the end.
There are dozens of things that my family will need to pay for that are a direct exorbitant cost from my son’s disability. FSCD or health benefits will not cover those things (i.e. tutoring.) But the Alberta Government has legislated assistance for some things, and our family is completely within its right to ask for that assistance. The difficulty arises when we are scrutinized every year, leaving us to feel more like beggars than the brave and resourceful people that we are.
I intend for my son to become a fully functioning member of our society. He will be raised as a citizen, despite his disabilities. He will work, live on his own, pay taxes. In order to achieve this, he will need to be challenged and assisted while he is young, to gain the tools to achieve further. FSCD publicly advertises how they help families with money. What the public doesn’t know is that those families, sometimes, wouldn’t have received some of those funds unless they researched and requested every dollar in their contract. It sounds simple, but in fact the process can be overwhelming. Families with children with disabilities live an exhausting life, that no one understands. We need advocates to help us … not grumpy government workers who get bonuses based on the retention of funding rather than the disbursement of it to families who need it.
Often families who have contracts with FSCD feel that the government doesn’t really care about the healthy development of their. Government employees live in bureaucracy, far away from the challenges of raising children with challenges.
As far as qualification goes, the FSCD guidelines state that the child must have a disability as defined in the FSCD Act:
“disability” means a chronic, developmental, physical, sensory, mental or neurological condition or impairment that does not include a condition for which the primary need is for medical care or health services to treat or manage the condition, unless it is a chronic condition that significantly limits a child’s ability to function in normal daily living.
Did you understand that?? It’s confusing! And there’s enough ambiguity in there that parents (who are exhausted and sometimes powerless) could feel simply too overwhelmed to defend their position. If supports are negotiated, they are offered at the bare minimum, just enough to say that a child is receiving them. For example, for travel expenses to specialist appointments, families are offered only $0.12 per kilometre.
I was told this year that we need to start preparing for our son’s 18th birthday, when he will no longer receive supports. Apparently, FSCD wants to protect families of young children from the pain of this harsh transition, by gradually reducing supports as the child nears that critical age. My boy is nine. So rather than investing in the tools to help him grow in strength as a young Albertan, I am told to resign to the fact that he’ll always have to be a drain on society, and the less we spend on him the better.
Looking into the eyes of a government worker who is drawing up an assessment during the hour long meeting in my living room, I wonder how I could dare trust her. She does not know my son. When he succeeds, she does not recognize it. When she goes home at night, she does not recall his existence. When he turns 16, then 18, then 24 and 30, she will not be there, watching while he struggles to find his place in the world, trying to find a job, trying to fit in to the social structure which has always marginalized him. She will one day retire, and settle in to her generous government pension. Meanwhile, one day, I will leave him alone. My prayer is that he will live a full and meaningful life when I’m gone.
The structure of the FSCD program holds a systemic flaw. Families need advocates, navigators, who can help them use the resources they are entitled to to build into their child’s life early, and establish them for success. Currently, the family does not meet an advocate, but a gatekeeper, and for many families, it is too difficult to work through.
Society at times doesn’t know what to do about developmental disabilities. Some attempts have been to either hide them or cure them. Acceptance hasn’t really been on the forefront. This needs to change. We need to accept people with developmental disabilities into our regular world. We need to stop trying to hide them in institutions or avoid them through selective abortion. Plus we need to carefully balance the fundamental tension between the values of acceptance and cure.
It’s time to start considering the scientific reality of standard deviations. There will always be those within our society that measure the outside of the norm. There will always be those who are faster, smarter, slower, duller. It is not healthy for a society to chop at the extremes, to marginalize those who don’t fit within the norm. Rather, it is healthy on multiple levels for community to welcome all people, and encourage personal growth and experience to every child.
Handicap isn’t only when you’re just trying to find a parking space. It’s every minute of every day. I am thankful for my son. He is a package of hope and a bundle of joy. I hope that one day, when he tells his story, it will be as a regular contributor to his community, and that the world around him will be better for it.