Wednesday, February 25, 2009

Special Needs Family Members and Governmental Agencies

This blog is for parents of special needs children of all ages. If you have a diagnosis of a physical or mental disability for your child that makes it difficult or impossible for them to function in the “normal” world there are things you need to do. First of all, make multiple copies of medical/psychological findings. Even if your child's disability appears obvious to you, there are people in Washington DC who aren't as observant.

Your child may well qualify for financial help from Social Security and from the Department of Developmental Disabilities.

Next go to the Social Security Administration and apply for Social Security Supplemental Income. The Administration may send you to a psychologist to verify your child’s disability. Be sure to make multiple copies of those findings, too. You think they will keep this information in a file or computer, but don’t bet on it. If you qualify for SSI it may come medical coupons to help off-set some of the medical costs associated with raising a special needs child.

You may also qualify for Respite Care and depending on the level of your offspring’s disability it may be a life saver. It is difficult to find qualified Respite Care givers, but if your child is in Special Education classes there may be Para educators in your child’s school who do Respite Care evenings and weekends or you may know college students who are familiar with our child and can get signed up to do Respite Care.

As your child gets to middle and high school age, get him/her signed up with the Department of Developmental Disabilities. As your child receives training in school toward a job, monies will be available to help support them in a job when they exit public school. If you are lucky, your child will find a compatible job before that support runs out. Depending on your child’s disability you may have to decide between quitting your own job to take up the slack in supporting your child’s job or giving up on employment for your child. I know more than one parent who has chosen the latter route.

With employment will come extensive record keeping of pay stubs and a roller coaster of SSI amounts on monthly checks. In the event that your child becomes unemployed getting your SSI payments restored to their original amount may take you one to two years depending on the cooperation of your child’s employer. You may have to make a career of sitting on hold trying to speak with a human being to convince your child is not working.

The most frustrating part of dealing with the Social Security Administration is when they decide that your child needs to be reevaluated to make sure they have not been cured of their disability. We ran into this when my daughter, who has Down’s Syndrome was sixteen. We had moved from California where we were receiving SSI payments to Washington. When I attempted to get her payments moved to Washington the office in Astoria Oregon, the nearest to our home, decided that she needed to be reevaluated. I couldn’t believe that a governmental office would ask a family to prove that a child still had a genetic anomaly—had not been cured in the night. I assured them that should I awake some morning to find my daughter “cured” they would be the first to know right after the Pope. It didn’t matter.

The entire process of Social Security finding a psychologist to test my daughter took six months. In the meantime we lost her benefits. Simultaneously I lost my job and during that time we lived on unemployment and my meager savings. Finally we got an appointment to see the psychologist. He called to schedule the visit and told me that I would be leaving my daughter with him for a couple of hours. I could go shopping or something since he had no waiting room. No way was I going to leave a handicapped young woman with a strange man, psychologist or no, alone for two hours and I told him so. Well, he told me, I’d have to wait in the hall. When we arrived at the office and I knocked on the door the psychologist opened it, took one look at my daughter and said, “They didn’t tell me she has Down’s Syndrome. This will take about 15 minutes for me to fill out the paperwork.” It took about ten.

It was another month before we received a check for seven months worth of SSI payments, sans interest. In the meantime I’d exhausted our savings, had a car on its last legs, and literally pounded on the counter of the Astoria Social Security in desperation over not having the money. That office now has Plexiglas to prevent irate recipients from doing that or worse.

When my daughter exited the public school system at age 21, no one bothered to tell us that I could receive Parent Care Provider money for continuing to care for her. After initially registering with the Tacoma DDD after moving from Nachotta to Gig Harbor they contracted with a private agency to support her in employment for a few years. After that we were largely ignored until we got a new case manager. That is when I discovered that I could have been receiving Parent Care Provider money for doing what I consider to be my job, caring for my daughter at home. Even after it was offered to me, something of my grandfather’s pride that prevented him from going on “the dole” during the Great Depression, prevented me from applying for two years. Finally I decided that it would be a good idea in case something happened to me so my husband could step into the position or one of her brothers. If you have a special needs child who has reached majority age and you are still caring for him/her at home do not hesitate to apply. We’ve had good case managers and bad ones and the yearly evaluation takes an afternoon, but if you’re lucky you can do it over a pot of tea with a nice person.

Now my daughter is nearly 38 years old and Social Security is once again wanting to determine if some miracle has happened and she no longer has Down’s Syndrome. Why, in this age of computers, recipients who have a genetic condition that prevents them from functioning in the general population cannot have their files coded as such is beyond me. Why they can’t read the findings of the psychologist in Astoria in 1987 and see that she has a condition that is not going to improve, in all likelihood will worsen over time, is also beyond me. So once again I have to prove that she is still mentally and physically handicapped. Paper trail. Parents, be prepared. Don’t assume that only an idiot could doubt your child’s disability. There are idiots working at the Social Security Administration.
If you have difficulty either with a governmental agency or your school district PAVE in Tacoma can be an excellent resource for sorting out problems.


Kim Thompson said...

Oh My Goodness!

I am one of those parents and this information is like finding a diamond! An absolute treasure! I shall re-read again and comment further!

Thank you!

Stephanie Frieze said...

I would like to prevent parents from missing out on help and being prepared for the silliness of the government.

Lorraine Hart said...

I am very grateful for the COPES program that allows me to care for my daughter...and still pay my rent.

2Grandmas2 said...

Ah, another mom with a child with DS. My daughter is 25...our lives (my life) has completely changed since I was able to get the proper funding for her care.

One thing that cracks me up is that for her to keep getting to use Access vans (specialized transportation), she has to have a complete re-evaluation. Yup, gotta check and see if she still has Down Syndrome.

Great rundown on the services!
Sandy (S2)

Stephanie Frieze said...

OMG, I can't believe that the government can't get it into their head that my daughter isn't going to wake up some morning and be cured! See my letter to Social Security on the Tacoma News Tribune blogspot "In Your Neighborhood."

Stephanie Frieze said...

Late last week I emailed our Washington Congressional delegation regarding this business with SSA and immediately received a letter from Patty Murray's office with a release form so they can look into it. I hope that Congress can get SSA to code files so that we don't have to repeatedly prove our child's disability!

Stephanie Frieze said...

Here's another update. After contacting Senator Patty Murray's office I received a call from the Tacoma Washington SSA office and learned that my daughter's file will be coded to end these ridiculous re-evaluations. Occasionally the squeaky wheel gets the oil.