My Public Comment To The National Council On Disability Quarterly Meeting July 28, 2016

To the members of the National Council On Disability,

The connections between disability and poverty can be seen in people with disabilities in various ways such as in the limitations of equal economic opportunity to those born with disabilities and their families,  in the financial crises caused by becoming disabled as a working adult, in the inability to return to the work place and lack of assistance to become independently productive, in the resistance or discrimination encountered attempting to rejoin the workforce,  and in severe or total lack of productive economic capability.

All disabilities are unique and there is not a one size fits all solution to this complex problem of poverty and suffering in our community, though virtually all people with disabilities must rely on some level or form of assistance, support service, or process of legal protection and advocacy of Disability Civil and Human Rights.

The Right to Rehabilitation should be an entitlement , not a service which a person with disabilities must otherwise qualify for, a right to gain or regain the abilities to be as productive as one can at whatever level one can achieve.

Our disability system itself creates much of the hardship and poverty for people with disabilities because it is not a comprehensively coordinated efficient system, but one with programs and services spread across thousands of federal agencies, state governments, CMOs, and NGOs.

One of the steps needed to address the poverty in the disability community is to have a Disability Services Coordinating Office where a single case file and records can connect a person with and qualify them for every federal, state, and ngo service available to them.  An office which does not run these programs but serves as a hub with the ability to contact and inquire about those services which a person with disabilities is having problems with, and if the agency is non-responsive, the coordinating office can hand it over to either P&As or to the DOJ.  The amount of time and energy and frustration this would itself save would empower people with disabilities.  Case workers and social workers at the coordinating office or working through it would be able to help address any and all life challenges faced by people with disabilities and their families, especially when those challenges are overwhelming.

Our system is also broken, creating financial hardships after a disability occurs and before financial help comes from Social Security or other Disability Insurance.  There may be no way to pay the bills, especially the medical bills and bankruptcy may be a necessity.  And even once SSDI is awarded, it is often less than the poverty level and even with SSI payments added in, many of us live at one third below the poverty level.

The minimum paid to people with disabilities on SSD and SSI should be raised to at least the poverty level.  SSDI payments should not be calculated the same way that normal Social Security payments are by viewing the Social Security Trust Fund as a Mutual Trust.

And as a person becomes more productive, or marries, they should not lose the support services and payments they need to complete a transition to a more independently sustainable life.

Disability Services should be provided to all across the nation with equal access to programs by placing under Medicare all those disability services which are now delivered through Medicaid, or through rehabilitation programs in the Dept. of Education.

Often middle class families who do not qualify for Medicaid can not get the disability services needed for their children because those programs are only delivered through Medicaid, that is not just.  The delay in providing Medicare Services after a disability must be eliminated to address the poverty caused by lack of insurance coverage for disability medical services due to that delay.

The lack of adequate mandated Protection and Advocacy and other legal services which cover all of life’s such problems means  that a person with disabilities is often robbed of their rights to accessibility or accommodations, rehabilitation, security in keeping their homes,  and equal education and employment, which would help them become more productive or to protect them from discrimination in education or in the workplace.  There is a severe lack of enforcement of Disability Rights and violations are too commonly repeated by government, insurance companies, financial institutions, and even in the legal community itself.

In the past fifteen years since my disabling stroke left me with brain damage, as well as being congenially blind in one eye and with a hole in the retina of the other, I have tried unsuccessfully to regain a sustainable level of my former professional self employed horticulturalist abilities.

I have been lied to, my rights violated and unprofessionally served by my state rehab agency funded by the US Dept. of Education, whose own Office of Civil Rights has said that denying me access to an agreed upon mediation with my state agency is not an ADA violation.  Since when?

While learning to read and do all of life’s task again in some manner or another, I have had to fight for physical rehab, but have never received the cognitive rehab I have asked for.  I have not been provided with the Social Worker or Case Worker or therapist trained in brain injury rehabilitation that I have sought for many years.

I have also asked for help with paper work filing and bill paying organizing for many years, as I have lost that ability that I was once good at as a self employed person, but I have never received that help.  Without such assistance other problems are created which cause further problems as well as much anxiety and frustration, and putting me at medical risk.

It was difficult to get county social services at first because I could not physically show up for intake.  The same is true when I tried to get help from Legal Aid, which offered no intake accommodations for people with disabilities.

When my non-escrow mortgage got flipped to a global financial institution, I have had to defend my home from foreclosure due to the refusal of that global bank to respect my disability property tax deferral granted by my state, and due to the fact that Legal Aid dropped me as a client when I refused a settlement I could not afford.  My claims to disability and home owner rights were also rejected by legal aid, yet I went on to win those points of law which Legal Aid had rejected.

I was saved from homelessness after my stroke because at that point all my financial records were very good and I could get a home equity loan, with others helping with paper work, to finance the first years of my recovery and rehab.  Had I not had my home to use for such, I would have wound up homeless, unable to pay the bills.

I was forced to choose to move from that home when I was refused by my city, with many successive excuses, a federally funded low income housing repair loan to bring my home up to safe standards for my senior disabled years.  I could not get legal assistance with this and though I managed with the help of a law clerk to file in federal court,  the judge rejected assisting me.

I have had to deal with fraudulent property lines, conveyed items being taken, harassment by yahoos with guns, and my mortgage on my current home being sold under the false assertion that I was behind on my mortgage when I was actually paid in advance.  A lot of legal time, frustration, and anxiety accompanied this and reactivated the PTSD I had developed in my earlier mortgage battles.

I have had my in home services taken away and had to fight to get them back.  I have been misled and badly served by the new Medicaid private CMOs which now manage my Medicaid services and have even had a CMO try to deny my right to ask for an ADA Accommodation saying that I had not shown grounds for the right to ask for such, had not established my disability with them, even though my disability services were transferred to them by the state and my medical conditions are on record with them.

There has been so much more adversity rather than assistance which have blocked me from coming out of poverty and regaining some of the life I once knew. I am still working on it on my own, but still not getting the assistance I am entitled to.

My story is often repeated by the majority of people with disabilities.

To end poverty in the disability community and to provide the equality guaranteed under the law for people with disabilities, our broken and dysfunctional system must be reworked because its failures are what create the poverty and inequality for people with disabilities.

Thanks so much for all the hard work the NCD does on behalf of 50 million people who are all too often invisible to the rest of society.

Always my best,

Jake Billingsley

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About Llanojake

Eclectic, Egalitarian, Enduring
Image | This entry was posted in ADA, Americans With Disabilities Act, Brain Injury, Disabilities, Disability Laws, Uncategorized. Bookmark the permalink.

One Response to My Public Comment To The National Council On Disability Quarterly Meeting July 28, 2016

  1. Sara McEachern says:

    Amen. Thank you for taking the time to do this. I have a child with a disability, and I appreciate your advocacy.

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