Slipping Through the Cracks

charley

I have been  a homeowner/resident and taxpayer since 1997. I suffer with Fibromyalgia, Chronic Fatigue Syndrome, Tinnitus and various other ailments. Because of my circumstances, I was scheduled to be out of my residence in November of 2008.  Conversely I am discovering it to be an unattainable task to establish housing that I can meet the expense of. I have recently exhausted all my efforts in finding safe, reasonable housing for a person on a fixed income.  In addition my last ditch attempt drove me to my local Metropolitan Housing Association, something I had earnest reservations about, but there too, is a waiting list.  Through no fault of my own I have become disabled and I am now in receipt of SSI.  In the course of my investigation I came across this interesting article from Disability Rights Washington’s (DRW) website, “People with Disabilities Priced Out of Housing”; "It is not just your imagination – you really can’t afford to live on your Supplemental Security Income (SSI) check.  According to a new report the average rent for a modest one-bedroom apartment in the United States was equal to 105% of your SSI check.  In other words, even if you spent your entire check on rent, you still would not have enough money to rent a one-bedroom apartment."    
I am drained, hopeless and exhausted in my search. I have covered places i.e. Catholic Charities, First Call for Help, HUD locations, Metropolitan Housing Authorities in counties in the Cleveland and surrounding areas.  I've considered re-locating to Texas but I continue to find the same ominous situation at every turn. I have been working in accordance with The CFIDS Association of America in trying to bring awareness to Invisible Chronic Illness and our lack of resources.  The following is part of what I wrote to the newly confirmed Secretary of Health, Kathleen Sebelius along with most other elected officials including the president, members of Congress, several Departments, Agencies and more: "There seems to be a familiar trend; subsidized low-income rental housing for the elderly and disabled; the wait for a unit averages more than a year and one in ten property managers have totally closed their waiting lists.  While I am only 56 (disabled) and on a fixed income there appears to be even slimmer choices.  With the influx of the Baby Boom generation there is a need for safe and affordable, low income housing for older Americans.  Americans who need low cost rental housing today are left out in the cold because demand so far outstrips supply.  The amount of Americans suffering from chronic conditions among long-lasting health issues that are resistant to a quick fix is on the rise. And for those of us who have to rely on SSI it is virtually impossible to find housing.  Supplemental Security Income is designed to help aged, blind, and disabled people, who have little or no income; it provides cash to meet basic needs for food, clothing, and shelter…not quite practical.  Subsequently so many Chronic Illness patients are forced to give up working and live a lesser lifestyle that no one prepares or plans on.  My last and only hope is that with the increasing awareness of chronic illness, the public and health care community will begin to address the need for people to adequately get the help they require."

If there is anyone out there with a suggestion on resources that I have not covered, I would appreciate your input.

 rakiethebird ( http://www.blogher.com/haystackprofile/viewprofile... )

I am new to this blog as of today.  For someone who loves words and writing, I have never been a part of one of these.  I have suffered with CFS/FMS for most of my adult life, but only recently diagnosed 4 years ago.  I'd just read Michelle Obama's post before reading yours and I was happy to see someone  approach her with the subject close to my heart.  As my condition spirals out of control, my hopes are quickly fading.  I am a 55year old divorced woman, with an 18year old who has just graduated high school.  A time which should be exciting for both of us is more terrifying than this disease itself.  I was forced to quit working in 2004 and have managed so far off of savings and credit cards. I have lost track of how many times I have been turned down for disability.  It brought me to tears reading your blog and the ideation of extreme poverty, lack of health insurance and yes, even homelessness frightens me more than the notion of dying.  Even if and when I qualify for SSI I will only receive Supplemental Social Security because after adopting my daughter at 8mos, I prayed to be in a position to be available to her during her school years (be careful what you pray for or at least be specific :). Over the years I was afforded the opportunity to work part-time which leaves me with not enough credits to qualify for full benefits.  While I look forward to receving SSI, it also frightens me to think how I will manage on such a small penance.  As if there isn't enough shame in trying to qualify for some type of local  Health Care, I am down to begging for Medications from Drug Companies.  I fear becoming a cripple because I can't afford to get Physical Therapy.  Slippling through the Cracks?!  I've fallen into the deepest whole I've spent most of my life trying to avoid.  I have always suffered with Chronic Illness but I have also tried to take very good care of myself.  I chided myself on being a Yogi practitioner and surrounding myself with a Galazy of Souls whose thoughts and work bring light to my life. I try to remain well-informed and commited to taking positive action but problems you thought you'd managed seem to keep resurfacing.  There is so much more to me than this disease and complaining about it but I fear my chance will never come.

Yes, I agree that the dialogue about health care for all must include those of us who slip through the cracks. We also cannot count on the government to find a cure but what we could benefit from are more not-for-profit organizations to act as a vehicle that supports, educates and empowers people with chronic illnesses on their journey to wellness.  Something I feel passionately about and dropped the ball on creating because of my illness.  I am sliding off of my Soapbox for now.  Thanks for this opportunity to Share.

charley