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Disability and Housing Challenges Facing Chronic Fatigue Syndrome & Fibromyalgia Patients

  [ 257 votes ]   [ Discuss This Article ]
By Eunice Beck, RN • www.ProHealth.com • April 30, 2003


Dear Friends,

Two recent events that happened within the same week led me to write this letter. First, there was an article in my local newspaper about some residents being forced to move from a senior complex in town. They didn’t meet the criteria of the complex because they were disabled, not seniors. This push to make them move came not from the management of the apartments, but from a state agency which supervised senior housing. The agency threatened the owners with loss of their senior residence designation unless the tenants who did not meet age requirements (the disabled tenants) were required to move. The management of the apartments was attempting to help find alternate housing, but it is tight in this town, especially for those on limited incomes. The reason the story especially piqued my interest was because one of the individuals being evicted was a 27 year old with fibromyalgia.

Thankfully, while I was getting over my anger enough to think clearly what I might be able to do to help, the problem was resolved, this time. The state agency involved decided that it could “grandfather” people who already lived in the complex. The reason this happened is because the young lady with fibromyalgia went to the local newspaper with the problem. The publicity made the difference, for these individuals, in this situation. However, the next person with a disability who applies to live there will be denied.

In the same week I got an email regarding housing for people with disabilities.

It was from Kathleen Houghton . She was asking for stories of the difficulty in finding affordable, accessible housing to be used in an effort to educate policy makers regarding this issue.

THE HOUSING CRISIS FACING PEOPLE WITH DISABILITIES: TELLING THE STORY


Finding affordable, accessible housing is a significant problem for people with all types of disabilities across the country. Over the next few months, the Consortium for Citizens with Disabilities (CCD) Housing Task Force will be creating opportunities to educate government officials, policy makers, opinion leaders, and the general public about this mounting national crisis. For example, the next version of the Priced Out report will be published in March, demonstrating a significant explosion in housing costs as compared to Supplemental Security Income (SSI) monthly income.

We need to "put a face" on this issue by gathering stories of individuals with all types of disabilities from across the country who would be willing to talk to a member of the press (print, broadcast or electronic). We need stories of adults with disabilities who:

1) Receive SSI benefits;

2) Have attempted to find affordable rental housing, and/or
affordable and accessible rental housing, and/or or who simply need
affordable housing (i.e. they are living with aging parents, paying most of their SSI income for rent, "stuck" in a group or nursing home where they don't want to be; homeless or about to be homeless etc.).

If an individual has sought help from a public housing authority (PHA), a HUD regional office, or a local affordable housing or disability organization and has been told he/she must wait years for housing - such stories are also critical.

Reasons for inability to secure rental housing could range from:

1) The individual was told that Section 8 vouchers were not
available

2) The individual was told that all the waiting lists were
closed

3) The individual was told the subsidized property was
elderly-only and they were not eligible to live there; and/or

4) The property would not accept a Section 8 housing
voucher and/or

5) The property was not accessible

The combination of the local situation and the email made me realize how insulated I am. I have a partner, and although both of us are on disability, we both worked in professional settings and receive disability income which allowed us to stay in the house we owned and to live a life that is comfortable for us.

I was reminded of how many of us with these disabilities and others live on the edge, financially and otherwise. One of the things we are told to avoid is undue stress. But how can one do that when one doesn’t know if she will have a place to live, the medication he needs, or food on her table. I know there must be some living with CFIDS/FM who are doing so on the street.

I guess I felt compelled to write this because it was such a wake-up call for me. I wanted to help but didn’t know how. I did call the writer of the newspaper article, but by the time I did it had been resolved. However, I did learn the importance of paying attention to both Social Security and disability issues. I will attempt to communicate with my legislators about these issues. I will try to speak up for others if they are unable to do so for themselves, or join my voice with theirs if they have done so. I guess I’m saying that I learned I must be more aware of the needs of the CFIDS/FM community.

I have also become aware due to an email from a friend, that people with the diagnosis of fibromyalgia have a very difficult, if not impossible time, getting health insurance at all, let alone something that is affordable. I will have to pay more attention to the national health coverage issues.

I have, over my time writing this column, gathered a number of resources to help those who are living on a fixed income and have limited ability to provide for their needs, especially in the area of medications, which are so expensive. Most of the drug companies have programs to provide their drugs free or at a greatly reduced cost. I have a list of web sites much too long to list here, that tell one how to find and use this resource.

I also have a number of websites with suggestions for “frugal living.” I would be glad to share this information with any readers who would like the data. Just drop me a note at copingcorner@prohealthinc.com and I will be glad to help. There is a CFIDS organization which can provide short-term or one-time financial assistance. There are also some public and private institutions that will do the same. There are resources, but finding them is difficult. We need to speak as a community to help those who are in need. I will make more effort to add my voice. I hope you will too. Take care and be well.

Yours in health,

Eunice

----------------------------------------------------------------------


I welcome your comments and questions at: copingcorner@prohealthinc.com. My articles and email responses are not being offered as those of a health care provider. The information and opinions included are intended to give you some information about your disease. It is very important that you empower yourself with knowledge and participate in your own search for care. Any advice given is not intended to take the place of advice of your physician
or mental health care provider. Always follow your physician's advice, even if contradicted by something written here. You and your physician know your situation far better than I do. Thank you and be well.



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