It turns out that young adults like me are struggling to stay out of senior nursing homes and hospital-like institutions all over the country, not just in New Jersey. Here's a great letter to the editor from today's New York Times on the subject.
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September 27, 2009
LETTER
Freeing the Disabled
To the Editor:
Re “Helping Aged Leave Nursing Homes for a Home” (news article, Sept. 19):
Older adults are not the only ones who suffer the jail-like indignities of confinement to nursing homes. The real tragedy is people with disabilities in their 20s, 30s, 40s or 50s who are condemned to spend the rest of their lives in nursing homes because of spinal cord injuries, traumatic brain injuries, cerebral palsy and other disabilities that interfere with independent self-care.
Your article describes some of the many benefits of community living, including, above all, freedom. But Medicaid’s institutional bias denies these younger adults the right to live and work in the community — and denies them their freedom.
Health care reform could end this oppression and allow people with disabilities and older adults to choose where they want to live. Policy makers could end the institutional bias by including the Community Choice Act in health care reform, thus throwing open the nursing home doors to freedom and community living for all to choose.
Barbara L. Kornblau
Grand Blanc, Mich., Sept. 19, 2009
The writer is dean of the School of Health Professions and Studies, University of Michigan-Flint, and health reform policy coordinator for the American Association of People With Disabilities.
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Please tell everyone to write to their Senators and Congressmembers to Washington to make sure the Community Choice Act or the Community First Choice Option are in the health reform bills. This would allow Annie to get services in the community. Start a big letter writing campaign. Go to Washington and speak with staff from Congressional offices.
ReplyDeleteI am so happy this has been brought to people attention, I had bilateral tarsal tunnel on my feet and I am 100% disabled due to this, I was misdiagnosed and left with severe nerve damage to my feet, this disability is extremly debilatating, I have bloged for sometime trying to get attn about this, I pray that we can now see some charitys raising money to help people like us, there is no charity for victims in such pain, people do not realize that you can not function, or work anymore due to pain, meds and all that comes with this, the other thinh is it is an invisable disability you can not see ones pain and suffering, being a single mom my whole life working 2 jobs and just 4 yrs ago I walked into the operating room and came out disabled, never to be able to work again, I hate being stuck at home, I was a go, go go person, giving, doing fundraisers for our troops, recieved coin for excellence from Iraq troops #399 now I hav to learn to help myself, there is no help what so ever for me, I have been everywhere and seen so many neurologists, see I was never given a EMG b 4 this surgery and found this was a must, I was only in menopause, that is why my feet hurt, I pray now people are aware of all of us who suffer being so young, now broke, no retirement nothing it is all gone, the only ppl in this world who can get away w/mistakes is Doctors even death, need a change with this, even our president can loose his job, I feel the surgeon who did this shld be paying for all my medical bills, the sad thinh is I put in bold letters that I had a partial Hysterectomy at 33 yrs old due to cancer, so at 45 this shld of been a red flag, lets do a blood test just to RULE OUT menopause, how sad is this to have your life ruined over a simple blood test...thanks for bring attention to so many ppl suffering Janice
ReplyDeleteHi Nancy and Harvey, Of everything I wrote down during our conversations, I forgot to ask for your phone number! Can you email me your number? Best regards, George Rubsam
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