Wednesday, August 20, 2008

The Disability Jungle

I've visualized creating this blog for such a long time -- well, actually, the idea started as a web page, but I finally settled on blogging because the trend has become so comfortable for most people that maybe I can draw more attention to our cause by using a medium people will actually use.

The primary purpose of this blog is to create a forum and point of information for those who, like myself, have children or other relatives requiring disability services in North Carolina and who, like me, have had to swim among bureaucratic sharks in the disability system ocean in order to obtain those services.

By nature, I am soft spoken, very kind, and an all-around friendly gal, however, obtaining services for my autistic son and my developmentally delayed son (twins) has sometimes turned me into a person I don't always recognize. A few years ago before the boys graduated from high school in Mecklenburg County, whenever services weren't forthcoming, I'd march (like a mad woman) into the Charlotte-Mecklenburg County Schools Administration building and I believe when I cracked the front door someone sent up a flare that "Mrs. Ransom has entered the building!" However, I found that displaying a "demanding" attitude seemed to be the only way to get services that my sons rightly deserved. I always showed up armed with file folders of information (mostly the boys' medical and school records), I was comfortable verbally presenting my case, and because I worked at night, I had TIME.

Time can be your worse enemy and most scarce commodity when navigating the disability jungle. There's lot of researching, waiting, meetings, arguing, phone calling, letter writing, arguing some more, threatening to call Raleigh (and sometimes actually having to call Raleigh and/or Washington), more waiting and then MAYBE finally receiving the requested service. Unfortunately, I've found that many parents, and especially those in the African American community, don't possess many of those tools -- especially TIME -- and, therefore, either don't receive the services their family members deserve or settle for less than they deserve.

I want to hear what other parents are experiencing. If possible, I want to help you navigate the system. And most of all, I don't want you to get discouraged and give up because your children, your parent, your spouse has the right to certain services and together, we're going to obtain those services.

Also, I want to bring more attention to how disability services are under-represented by the media in our community. Oh, we all heard about the United Way scandal in 2008, but did you hear how Residential and Support Services of Mecklenburg County helped my Alan get a job and instead of sitting at home receiving an SSI check (for which he already qualified), Alan is a working taxpayer who votes, regularly gives blood to the Red Cross, volunteers as a Special Olymics basketball coach during the fall, has volunteered for Habitat for Humanity, and has his own savings, checking, and 401-K accounts. You didn't hear how Vocational and Rehabilitation Services of North Carolina is connecting my autistic son Aaron with a business owner who allowed him to job-shadow at a web design company. And you definitely didn't hear that the ARC of Mecklenburg County is sponsoring Asset Management classes for individuals with disabilities that teach them how to manage their money, their time and their lives. However, because of the reports about the United Way scandal, giving is down so The ARC of Mecklenburg County is going to suffer a shortfall. There needs to be more balance in reporting regarding our disability system. While the system is far from perfect, it's definitely not all bad.

But, I won't go on and on about my personal experiences, however, I will highlight them when responding to individuals leaving messages on my blog. My request to you is this: If you have a child or other relative in need of disability services and you feel they're not receiving what they deserve, post your comments here and I'll work to help you find what you need. I have several resources that I'm going to post here -- with the help of my autistic son Aaron who not only taught himself to write HTML, but also attends Web Design classes at CCPC.

I look forward to hearing from you soon! Post your comments/requests here or email me at glenda.ransom.nc@gmail.com.

Mama Glenda

P.S. For a comprehensive guide to services and supports for individuals with disabilities in Mecklenburg County (Charlotte), go to http://www.arcmeck.org/ and click on "Online Resources." There you will find an excellent Resource Guide.

No comments: