Hello Nicole - August 2000

Dear Nicole,

I’m a parent of 2 children with disabilities and one (my youngest) without. I’m frustrated with the way I’m treated by the system when I try to get the support services my family needs and is entitled to by law. I find that the case workers assigned to help us receive the services instead act like it is their job to prevent us from getting these services and support! They seem to only want us to have the bare minimal amount of help possible and when I tell them my children need X, Y or Z in order to manage school they look at me like I am just trying to scam the system out of money. These people think they know more about what my children need than then I do! How can I convince those who control IEP at school and PCA service allotment that I am not wasting the state’s money and that my family really needs these services to get by? Do you know others who experience workers with this attitude problem or is it just my bad luck? Are there any organizations that I could call for help in dealing with this?

Sincerely, Fed Up

Dear Fed Up,

The “attitude problem” you are talking about is a real issue for many of us in need of assistance from government programs. Yet, few and far between there will be a good worker who has this job because they genuinely want to help people in need. I had a caring worker at one point who let me read part of one of the books they use to determine eligibility for the different programs. What struck me about the way the book was written was that it was entirely mathematical, for example it never referred to people, but rather “units”. I think this euphemistic way of thinking is part of the problem with government workers. They are trained not to think of real human beings but rather in terms of simple formulas, categories of units and math. I remember my first experience with the insanity of the system when a social security worker looked at me (in my power wheelchair) and said without flinching that I was not eligible for any help because I was not disabled. For a minute there I thought I was cured!

Another contributor to this bad attitude is societal ­ people with disabilities are a devalued group in this society. In general, people don’t want to help us but feel they must. So the “help” has to be carefully monitored because heaven forbid someone who does not “need” the help should get it! I imagine that the workers feel they have the job of protecting all the “hard working” people from supporting more than they absolutely must.

Of course, a worker’s job is determining eligibility for programs but the other part of their job should be to encourage those who need help to get all the help they can. Unfortunately, there are very few workers who take this part of their job to heart. Whenever we have to fight for the crumbs thrown to us it is frustrating. You are not alone in this. It sounds like you are an assertive person which is what it takes to get the help we need in spite of workers who don’t want to give it to us. Also remember there is an appeals process if you don’t get the help you think you are entitled to.

A couple organizations that may be helpful to you are PACER Center 612-827-2966 and MCIL 651-646-8342. PACER is an organization set up to help advocate with parents of children with disabilities for special education support in mainstream schools. They offer consultations/advice, information, problem solving, and workshops on many relevant topics including learning to get the most of out the IEP process. MCIL has a support group for parents of children with disabilities that may be useful in getting new ideas, comradeship and support and offer a place to vent your frustration with others who understand.

I hope this helps a little. It certainly isn’t fair that we have to deal with uncompassionate people when our lives are already difficult and complicated enough.

— Nicole