Thanks to WSMV Channel 4, Nashville, reporter Dennis Ferrier, for coverage that captured the passion as well as the essence of our national crisis.
My addendum: While change is slow, I am sensing momentum and am feeling hopeful. It’s going to take all of us raising our voices, collectively, to create awareness and change. As I said in the above interview, and I will continue to say, we’ve now grown up en mass, as a generation within the autism community and are standing on the perilous precipice of an unknown future. The following quote didn’t make the interview….Thanks to Erik Carter, Ph.D., new wonder boy of Vanderbilt Peabody, for the talking points…If we look at the problem facing our youth regarding college supports, meaningful employment and independent living supports/housing, it is overwhelming. However, it is manageable when we ask–what can one organization, one faith community, one person do–each–to help one person with a disAbility?…I do not single out autism in this crisis we are facing. Of course, it is a greater disAbility problem. Now is the time for change to happen. An encouraging fact is that we do not have to "reinvent the wheel to create these opportunities." They are being innovated nationally. We just need to bring them home to Tennessee.
And here's what every parent of a child with a disAbility can do to enable themselves to be the best and most effective advocate possible for their child and community. Partners in Policymaking Leadership Institute is absolutely THE best decision you'll ever make on behalf of your family member with a disAbility. Absolutely LIFE. CHANGING. If you're not in Tennessee, check your state Developmental Disabilities Council (or whatever it is named in your state,) as all but just a couple of states have this program. I am a graduate of the class of '99. Now pay attention! The date to sign up for the coming year is at this month's end:
The Partners in Policymaking Leadership Institute is a no cost leadership, advocacy and self-advocacy training program for adults with disabilities and family members of persons with disabilities from across the state, sponsored by the Tennessee Council on Developmental Disabilities. Partners attend 7 information sessions by local and national experts in the disability field on a variety of disability-related topics, and complete related assignments. Most Partners training weekends begin at 12 pm on Friday, and continue until 3 pm on Saturday. Classes are scheduled for September, October and November, 2012, and January, February, March and April, 2013. Apply by April 30, 2012. Contact Partners Director Ned Andrew Solomon at 615.532.6556.
Coming to the blog on ArtsFriday: Laura Craig McNellis shows again in NYC and GraceArt featured in a two-page spread in yesterday's Tennessean.
April and May were so busy, I failed to get the raw footage of this interview, which is gone offline. As of June 7, you can read the print version here.
Just one ahhhhhhhmayzing mom – a warrior for her baby – just really so proud and happy to know you – MOVE TO ST. LOUIS. God bless. 🙂
I do not live with invisible ilelnss/disability. I un/exist…I have been dealing with an invisible ilelnss/disability since 2002. My masters thesis is about women invisible ilelnss/disability and I affectionately refer to it as “the most expensive suicide prevention strategy ever”! My life has been destroyed both by disability and the bludgeoning I have taken from government student loans programs who, despite all the requested medical information, refused to place my loans on interest-free disability status. I am unable to even rent an apartment now without a cosigner, which I do not have. And I cannot afford a lawyer, so I cannot fight them legally either. Two years ago a provincial MP office attempted to help me for a few months, but they were directed by the government to cease assistance to me. I learned also that revenue Canada was also directed by student loans to seize any income tax monies to which I should be entitled. I was supposed to receive over $1500 of medical refund monies from a medical trip to Seattle in 2005, and they stole every penny. I also do not receive my GST. (they seized a bank account and I was forced to close the other because they continued to steal from that one also, despite the measure taken to prevent this).My doctors asked me what exactly the government wanted from me, as we have provided them with all the information possible. At one point we figured it was my blood they wanted, but I was quite anemic and had none! lol I do have some now, so perhaps they still want it? My prescriptions are once again being held hostage by unfair pharmacare as the deductible has been raised to $10,000! So I can’t afford the cost of any prescriptions I need.It has become so embarrassing that I pray for either a windfall lottery win or death I don’t and never did use drugs, i barely drink and i was a very physically active person. i was a cowgirl and a jock. My son is now a young man, and this has devastated him also, because he watches me suffer in so many inhumane and mortifying ways. I waited over 6 years for surgery to save my life, was refused treatment out of province, and my primary health insurance through my employer refused to authorize payment for treatment back in 2005 so I was forced to wait 4 more years in BC for surgery that I finally received a year and a half ago. But the internal damage was so extensive, doctors advised me that I will never fully recover; and in fact, the symptoms have already begun to recur. Because my employer only has to pay the extended health premium, while I remain on long-term disability, there is no incentive for them to sponsor a return-to-work program for me. (They would then be responsible for a portion of my wages). I continue to meet the criteria qualifying me for this program, but I am not an invalid. But this doesn’t seem to make a difference. I am a victim of misfortunate, catch-22 politics. I need to earn my full wages to afford accommodations and living expenses (mostly toilet paper, since that is where most of my days are spent). .I am effectively homeless due to my situation as I have to pay accommodations in the 3 communities (10 hours apart) that I must travel between for my doctor, psychiatrist, and counselor appointments. (I have been unable to find a new doctor in any other community over the past 10 years of dealing with all the medical stuff, which leaves me no other choice). And I must starve myself in order to make these medical trips, which is not so unusual, as eating is a privilege that I am frequently unable to enjoy. All of this contributes to my overwhelming and increasing sadness and escalating depression; all part of my un/existence and the invisibility of my disability.jorge mai kelly