March is host to International women’s day and Women’s month for the United States. I’m highlighting Nellie Bly (lonely orphan girl) for her journalism and advocacy of women with mental illness. Ms. Bly, born May 5, 1864 was offered a job, under the pen name of lonely orphan girl, with Pittsburgh Dispatch in 1885 after she wrote an article to the editor disputing the claim that women’s role were for child bearing. Shortly after that, she moved so she could work for the New York World. Her first assignment was to go undercover as a patient at Blackwell’s Asylum for women. Her reporting provided details of brutal treatment of the women. She described that women were given spoiled food and made to spend hours cleaning the building and nurses rooms. When not cleaning, they were required to sit perfectly still on a bench for hours to think upon their behavior. But the daily iced baths and harsh body scrubs were particularly hard.

Her seven day experience provided vivid details for readers to understand the abuse of these women. The treatment was often worse then the illness. It helped put an end to such practices. Well at least some of them.

Ms. Bly also described that she started acting “normal” to leave but it had the opposite effect. The same for those whose condition would have been temporarily. The doctors were interested in their preliminary”tests” and that’s all. Meaning once you were in, you never left!

The same is true for many disable women and men. Our system of medicine has created a “reverse or forced migration.” Individuals 55 years or older are moving into senior apartment living and eventually to nursing homes so health services are provided. Making an entire group segregated from the community.

While there are many reasons to move, like downsizing, for many it is a decision forced upon them because of a disability. At least many believe this is inevitable. What else can be done?  Actually a lot. Making insurance companies pay adequate Long Term Services within the home.

Long Term Services are daily and permanent help with bathing, dressing, medicine, and other life activities. Currently, both the amount and where you can get these services are restricted or not provided at all. If you are one of the lucky ones, you are on either Medicare or Medicaid which do provide Long Term Services. Medicaid does provide these services. However, states can set the limit and location. Making where you live the linchpin if you receive real help. Historically, Medicare would not cover “daily living” help. Meaning help that requires a medical background, like monitoring medication, was. Unless you pay for supplemental insurance, many senior citizens cannot get daily living help in their home. 

It can be understandable why many believe that being disabled means you must go into a nursing home for help. But that outcome is dependent on an insurance system and not on the type of disability you may have. The system is strategically targeting a minority group solely on the basis who they are and not meeting the needs of its customers. Simply, this has become a civil right issue.

After years of data that support investing in Long Term Services actually creates cost savings because it prevents additional health problems, the disability community is fed up! A new tactic, one that truly goes to the heart of the matter, is being used. The idea is that not paying for Long Term Services is a civil rights problem for the disable community. Not a bad business practice.

The Disability Integration Act has been proposed to Congress to fix the problem. The DIA, which has bipartisan sponsorship, gives a federal mandate of right to choose where you received yours services by requiring insurance companies to pay at fully integrated communities. Wasteful government programs are to be reduced by giving more latitude to states. Finally, it calls for public entities to create accessible and affordable housing that is independent of service delivery and integrated into the community.  (To find out how you can help, see http://www.disabilityintegrationact.org/fact-sheet/)

Advocates have stated that DIA builds upon 25 years of the Americans with Disability Act. I disagree with that because it neglects the work of people like Nellie Bly, who brought light to mistreatment of what in modern day  we call – hidden disabilities.