One of your best assets when navigating the disability jungle is a set of organized files – medical records (doctor & hospital visits, pharmaceutical receipts & labels), school records (IEP’s), Social Security notices – anything that references the disability. Also, keep records of conversations with support agencies. When I speak with agency reps, I write down who I spoke with, the date & time we spoke and a brief descriptive of our conversation. That way, if you need to reference that conversation later, you won’t have to say “I talked with a lady in your office the other day” – instead you’ll be able to say “I spoke with Ms. Williams in your office on Monday, August 25th at 1:15, and she told me…..”. Frankly, I suggest keep conversation records whenever you speak to an agency or company rep; recalling the conversation later will be easier and people tend to take you seriously when you speak with authority – citing dates and times. Unrelated to my sons’ disabilities, I recently had a beef with the cable company and spoke to several different reps over the course of a few weeks. Because I had recorded specific dates and times of unsatisfactory service, along with names of company reps to whom I spoke, the cable company offered me free upgrades and bill reimbursements. Recordkeeping is important in managing finances and in managing your disabled relative’s trek through the disability jungle. Purchase inexpensive folders from an office supply store and keep your records in a safe place. When you have to attend a meeting, take those folders along with a notepad and pen to record meeting notes. You’ll be better armed to navigate the jungle.
Note: 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.
Monday, August 25, 2008
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.
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.
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