Dear Members of the National Council On Disability,
The thoughts and comments I share with you go to all of the topics of concern addressed by this NCD meeting in that I believe no disability issues can be addressed effectively without a major overhaul of the system and without a much broader and deeper public awareness of and respect for people with disabilities. It seems to me that our society as a whole is ignorant of the harsh realities of being disabled, our rights, the lack of mandated services for us to live independently in the community, that society marginalizes and isolates us, and when confronted denies this and that extreme problems and violations of civil rights exist too commonly at an unacceptable level
Due to the almost constant adversity and lack of adequate assistance from our systems of disability rights, support services, medical, rehabilitation education system and from the majority of folks in society I have endured during the past 16 years as a stroke survivor disabled by brain injury and congenitally blind in one eye, now living alone in poverty, and being more than ten months without the in home care assistance I am supposed to be receiving, I am wondering how many more times I will be able to voice my concerns to you before I am no longer able. Those of us with cognitive and mental disabilities have our disabilities made worse by mistreatment from a dysfunctional system and this repeated trauma diminishes our ability to function more each time we are subjected to it, it produces PTSD, and it is cumulative, resulting in far too many tragedies. Obviously, such systemic dysfunction and societal marginalization are not conducive to good mental, physical, or financial health.
How could a better, more effective, more efficient, more egalitarian, and friendlier disability system be realized? The two main components of such imagineering are systemic and societal. Public education regarding disabilities must be as much of a priority as systemic reform with comprehensive coordination and coverage.
So first my thoughts on improving public perceptions of people with disabilities, and one of the first, most important, most effective and enduring ways to improve public perceptions by making more inclusive the signage and symbols we use for disabilities. It is far too common for people with disabilities to be told that we do not look disabled, which suggests as some studies have concluded, that an unintentional negative effect of using the blue and white wheelchair symbol alone for disabilities is that it has led the public to equate being in a wheelchair with being disabled, although in reality many or most people with disabilities need accommodations and accessibility in very different ways from those in wheelchairs.
Therefore, I suggest that as new disability signage is required to be placed, or old signage repaired, that a new, four part, multi-disability sign be the standard requirement for common general use. Disability specific accessibility or accommodation signage should also be used to improve overall the ease of accommodation for all types of disabilities. If the media and newspapers such as the New York Times would use the multi-disability symbol instead of the wheel chair only symbol to mark a story or editorial about disability, they would be making a great contribution to improving public awareness of disabilities. Here is one idea of a new, multi-disability sign which some in the disability community have already started using. I am asking my small town in Texas to ask for permission to use the new concept sign to meet the legal requirements for disability signage.
Another suggestion for educating the public and improving awareness of disabilities would be teaching it in schools. For example, at some point in their education a child who does not have a disability should be asked to choose a disability to try to experience for a long class or half a day. They could choose a wheelchair, to be blindfolded, or to have their ears well muffed, though I am not sure what they could choose for cognitive disabilities.
In general, a nation wide multi-media, decade long Disability Awareness campaign is needed to offset the existing ignorance and prejudice resulting from that ignorance. Instead of having the challenge of life with a disability topped with the challenges of societal prejudice, people with disabilities would be treated in a more understanding, helpful, and inclusive way. Many people with disabilities now fee that the lack of pubic awareness is in fact an additional disability.
A society which is more aware of the lives of people with disabilities is also crucial to making the systemic changes necessary to insure that people with disabilities are provided with adequate support, accommodations, and accessibility to live and thrive independently in the community. Having other citizens as our allies is crucial to completing the steps necessary to insure us the equality we are yet due.
As the great jazz musician Charles Mingus said, “Making the simple complicated is commonplace, but making the complicated simple, awesomely simple, that’s creativity.” The overriding problem with our disability system is that it is too complicated and impossible to deal with or navigate in a coordinated comprehensive efficient way, thus consuming far too much time, effort, and energy of people with disabilities, making it even more difficult to simply live a life much less have an equal place in society or being able to make things happen to the full potential of our abilities.
Disability services and programs are too disparate and lodged in too many different agencies without comprehensive coordination. There are two approaches I would suggest to more simply create and engage better teams of assistance for people with disabilities. One would be by creating a federally run, nation wide Disability Services Coordinating Office where a person who has applied for or is qualified as being disabled could have one case file which served as an application for all the federal, state, local, and gmo services and programs that person is eligible for. Case workers in that office would not run the programs, but would have authority to assist people with disabilities in coordinating them, resolving problems with programs, and even asking for ADA Accommodations for their clients so the burden establishing that right is not borne solely by the person with disabilities.
Another approach to improved coordination and comprehensiveness of available programs is to provide every person with disabilities and their families with a social worker or case worker to assist them not only with all the myriad of government services, but also to be able to help in a multi-disciplinary way and even outside the box to find solutions for all of life’s challenges. As a person with cognitive disabilities, I have long lobbied for social workers or case workers to be provided to assist us, otherwise we are subjected to trauma which is damaging or simply can not fit all the pieces of the puzzle together with consistent reliability without such a case worker as a jogging partner or shortstop as it were.
As I stated at the beginning, I have been without the in home care help which I should be receiving for more than ten months now, that is almost 600 hours of home support services not provided. Although I have asked the state, my doctor, and others for a social worker or case worker to help with such problems, I have not been provided one, and none of the five different agencies of offices involved in my case are responding to my pleas for help or reminders that I am still without services, this includes my federally mandated Protection & Advocacy agency, senior officials and attorneys at the Texas Health and Human Services Commission, my Service Coordinator at the the CMO now contracted to provide Medicaid Services for the state, my State Representative’s Office, and the Client Directed Services agency which does the paperwork and cuts the checks for my home care Service Providers. If I had a case worker who would help me with the hiring of a home care service provider, as is allowed, my well being would not be at such risk as it is now.
One of the biggest problems with our system is that good legal services are not adequately available to people with disabilities so that we do not get the services or accommodations we are due, and many times are even not treated with due professionalism and respect by those mandated to advocate for and protect us. A few years ago, my state P&A agency urged me to hang on for months and months, promising that a specialist in self employment for people with brain injury would be provided by my federally funded state rehab agency sot that I could return to my professional agricultural and horticultural self employment business of almost two decades, yet the state refused to provide what they had promised to the P&A, which did nothing about it. Recently my P&A argued on the side of the state rehab agency that I could not have an ADA Accommodation in their process because of a federal regulation and state rules, yet neither my P&A, not the state have provided me with the regulations they claim make it impossible to honor my ADA Accommodation requests, despite my requesting these many times. One day I was so badgered by my own attorney and staff at the P&A over this in a telephone conference that afterwards I had neck pains and felt as if I was going to have a heart attack or another stroke. I could go on about how I filed a complaint with the federal Disability Administration about this and yet nothing was done, and more, but not now. I will add, however that the federal government provides only $10,000 per year to each state P&A to do case work for people with brain injury. Brain injury is the number one disabled of people under forty and by my estimate, there are at least 250,000 Texans disabled by brain injury, and they can not be adequately served by pennies on the dollar legal services.
There are many areas of the law which P&A agencies do not get involved and the lack of being able to access legal assistance, attorneys, or protection can be all but impossible. Without that help, many of the services, programs, and protections necessary for people with disabilities are not provided and folks like me are left to defend a home from foreclosure by a global financial institutions which refuse to respect the disability home owner property tax rights granted by our state government, a case which I won and which legal aid had dropped me on because they misinterpreted the laws which I used to win the case. As with soldiers in battle, I may have won the battle, but it cost me more brain injury and PTSD, not an unscathed victory. It is impossible to escape the poverty of disability when instead of being protected, your disability civil and legal rights are easy game in open season to any entity which chooses to disrespect the law.
The federal government does not provide adequate, coordinated or comprehensive disability rights protections through its numerous disconnected civil rights, equal opportunity, fair housing, and other such offices, nor are those processes disability friendly far too often. Folks like me should not have to listen to a General Counsel for a HUD Region deny an ADA Accommodation for more time for completing a financial application process because the federal government is not bound by the ADA. Nor should the Office of Civil Rights for the Dept. of Education rule that denying a person with disabilities accessibility to an agreed upon mediation either by location or via telephone with a federally funded state rehab agency is not a violation of the ADA, especially when telephonic participation in mediation is allowed by the chosen mediation agency.
A well functioning disability system does not trap people in poverty by not providing financial or service support for more than a year or two after a person becomes disabled because financial chaos has already set in by the time support is received. At the very least a level of assistance should be provided from the time a person applies for disability status to avoid the financial train wrecks caused by disabling accidents suffered by working adults, the same for families of children born with disabilities. The minimum paid on Social Security Disability and Supplemental Security Income combined must not be lower than the poverty level as it is now for some 22 million Americans with disabilities. Other benefits should not be cut due to picayune increases in Social Security benefits until a person rises above the poverty level. It is offensive that I recently had my Food Stamp benefits cut by $2 per month because I got a $2 per month raise in my Soc. Sec. and SSI benefits, now totaling $754 per month, more than one third below the poverty level. As people with disabilities begin to produce an income again, our support services and benefits should not be cut or reduced until we have reached the level of a living wage, and even then the necessary support services which enable us to do that should not be cut or reduced.
Disability medical, therapeutic, and rehab services should be provided for all under Medicare and without the year or two delay in qualifying for it after one becomes declared disabled. Adequate protocols for disability services should be established across the board so that a person with a particular type of disability is provided with adequate accepted services under the established protocols without having to go through an advocacy process or being denied. Many middle class families with children with developmental or intellectual disabilities can not afford and are not insured for the medical and therapeutic needs of their children. Most of these services are provided through Medicaid and not Medicare, so that these families are not eligible financially, and many wait on disability waivers waiting lists for many, many years, before these services are provided. It is absurd to that a doctor can sign a statement that I need to be institutionalized or receive services under Medicaid Disability Waivers, yet I am denied waivers because I do not need regular nursing care, though I do need habitation, therapeutic, and other support services available only through these waivers programs. I have been denied the support services the doctor said I required and I have not been institutionalized either. It is incredulous that the US Center for Medicaid Services allows this, it is a violation of my Olmstead Rights.
As a formerly self employed licensed horticulturalist, prior to my brain injury in 2001, I have struggled ever since to return to a higher level of the professional functioning and have not reached my goals largely due to the disservice of others including those obligated to provide services, advocacy, and protection. I believe that Rehabilitation should be considered a right for all people with disabilities. Too often I have heard the phrase that these services are not entitlements. I believe all people with disabilities should be provided with rehabilitation and support to attain the highest level of productivity we can, even if that does not fit into the traditional workforce model. In addition to bringing more people with disabilities into the traditional workforce, it is important to develop alternate and independent workforce settings, so that the person with disabilities can contribute to society as best they can, as I believe that it is too difficult all the way around for many people with disabilities to be brought into the traditional workforce or to go there. This is anther area of disability therapy which belongs under Medicare.
Children with disabilities must no longer be arrested in class rooms for behavior caused by their disabilities thus criminalizing them due to their disabilities. The IDEA Act and other legislation providing for educating children with disabilities equally in a public setting must be funded adequately, otherwise they are just unfulfilled promises on useless scraps of paper. Educational opportunities should be available through the internet as well as in the classroom. Specialized training or instruction must be more readily available.
It concerns me that Texas is cutting acute and chronic care services for children with developmental disabilities by more than $350 million, in violation of a court settlement agreeing to provide such services. Though the State of Texas may claim that it does not have the budget to afford these services, it could have those funds available if it had not refused to expand Medicaid under the ACA. That refusal costs the state and additional $1-2 billion annually in payments to clinics for services for uninsured citizens. I do not think that states which have refused Medicaid expansion should be able to claim that they can not afford disability services or continue to delay services through use of waivers.
The new Texas regulations would also not allow in home therapies for children severely disabled if it is merely a matter of convenience for parents. I would argue that the ADA insures that making a process or accessibility easier for patients and parents is allowed and that the standard of it being impossible to make a visit a clinic is a violation of the ADA.
Adequate and accessible public transportation and special transportation services must be provided for people with disabilities, few of whom may be able to financially avail themselves with self driving vehicles.
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 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.
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 and our society made more aware because these failures and flaws 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.
With all my respect,