My Public Comment To The National Council On Disability February 23, 2017

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,

Jake Billingsley



Posted in ADA, Americans With Disabilities Act, Brain Injury, Disabilities, Disability Laws, Disability Rights, Disabillty & Poverty, National Council on Disability, People With Disabilities | Leave a comment

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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Me and Bob, 1965 – A Interiew With A Trapeze Artist

Time is such a funny thing; half a century can happen before you realize it, and then a photograph brings it all back home. There we are, me and Bob, at a cozy press interview, Friday September 24, 1965, at the now vanished Villa Capri Motel on the afternoon before Bob’s first concert in Austin, his fourth electric performance, and the very first time he was accompanied by “The Hawks”, Rick Danko, Robbie Robertson, Richard Manuel, Garth Hudson and Levon Helm, later known as “The Band”.




Fifty years ago, as a mop-topped, serious teen reporter with Buddy Holly glasses, wearing slacks with a sport jacket and tie, as required by the dress code of St. Stephens School where I was assistant editor of “The Spartan” the school newspaper, I did not know I was about to momentarily pass through the flames of creativity, in the presence of some astonishingly strange and muse full wizards about to become legends.




Things were so different then, it was easy for the editor of “The Spartan” to reach Angus Wynne, the concert promoter, to get permission to attend a small press interview with Dylan. It was not so easy for me to get permission from the school Headmaster to miss one academic class and to be driven to the interview with Bob by the school chaplain. The Headmaster had refused to let me go, but finally granted me leave at the last minute, due to the lobbying of my 11th grade English instructor and best teacher ever, Bowen Davis, who later became a mentor and friend to some of the women and men who were about to burst onto the Texas political scene, Ann Richards, Sissy Farenthold, Sarah Weddington, and Jim Hightower.

A book could be written about Bowen, who could be seen walking across the campus, nicknamed The Hill, with a satchel in each hand and a stack of books or print outs for class under each arm. Bowen was a human computer in the days before desktops.   Decades later at his memorial service, Ann Richards and I agreed that we were in awe of Bowen’s ability to give you a list to see, do, listen to, or read, and months or more later, the next time he saw you, he would ask you if you had completed the list.

Bowen said that if I wanted to interview Bob Dylan, he wanted me to write a ten page typewritten paper on the significance or an interview with Bob to be printed in “The Spartan”. He told me to have the completed paper on his desk by first thing in the morning. Then in his usual style, Bowen hand me a stack of bibliographical material including “Bound For Glory”, Woody Guthrie’s autobiography, Naat Hentoff’s “Playboy” interview with Dylan, several other interviews as well as articles on Leadbellly and others who had influenced Bob, and a copy of the first edition of Bob’s book of stream of consciousness prosaic poetry “Tarantula”, published earlier that year by Albion underground press of San Francisco. “Spin” magazine ranked Bob in first place for unforgettable sentences written by rock stars for his line in Tarantula, “Now’s not the time to get silly, so wear your big boots and jump on the garbage clowns.”

My collection of all the Dylan albums with liner notes and being able to recite the lyrics of all of Bob’s songs helped that epistle take form as the midnight oil burned. A pen edited copy of the typewritten paper was in Bowen’s hands shortly after breakfast, and when the Headmaster told me at lunchtime that I could go, gravity lost all of its effect on me, and barely two hours later, there I was at the Villa Capri with the chaplain, talking with some of the members of the band, “The Hawks” on a balcony waiting for one of my heroes to appear.

If only I had known. The band were a friendly bunch, though with such strange energy and appearance, especially Garth Hudson.   Although I liked to hang out at beatnik coffee and tea houses around Austin such as The Id, and was at ease with the bohemian artist lifestyle, and was even considered far out for my over the collar hair, there was something very different going on here, and I did not know exactly what it was.

Then Bob appeared walking across the courtyard below headed our way and I went inside the interview room to wait along with a reporter from the Austin Americn-Statesman, a DJ from KAZZ radio, the hip, eclectic FM station of the day, and some of the band members and promoters. I picked a chair beside the couch Bob was to sit on and as he came in and slipped by me he said, “Howdy, good to see you”, then sat down next to me.

What fun. The hour or so of back and forth slipped by in a wink, it was Bob being his most playful self. Then Bob and The Hawks retired to prep for the concert that night. The chaplain and I drove back to school, then isolated from Austin in the middle of the Davenport Ranch three miles down a one and a half lane road off of Bee Caves Rd. After dinner that evening a school bus full of preppies, attired according to the dress code, rolled back down that road and to Palmer Auditorium for what was to be a historic changing of the guard.



Bob’s first set was solo acoustic, but when the curtains opened for the second set, Bob and The Hawks let if rip. Garth Hudson played the organ like I had never heard before. There were a few boos from the serious beatnik folkies, but not as there had been at the Newport Folk Festival and two other concerts that summer. A couple of dozen of the beatniks walked out though. It was the end of their era and the beginning of something new, the hippie era was being born.

My interview story printed in1965 can be read below, perhaps with magnification.

When I asked Bob what kind of artist he called himself, with his changing musical styles, his venture into writing, and his plan to make a movie, his reply was quick, “ a trapeze artist”.

Now fifty years later, Bob is still a trapeze artist, I am a hermit goathereder and aging agitator living in rural Texas and agree more than ever, “Now’s not the time to get silly, so wear your big boots and jump on the garbage clowns.”

Happy Birthday Bob, may you stay forever young and may the chimes of freedom flash like never before.















Posted in Bob Dylan, Folk Music, Garth Hudson, Levon Helm, Music, Music History, Richard Manuel, Rick Danko, Robbie Robertson, The Band, The Hawks, Uncategorized | Leave a comment

Criminalizing People With Disabilities: The Ugly Face Of Fascism In The USA

Texas Congressman Ted Poe has introduced the ADA Education and Reform Act of 2015 (H.R.3765 — 114th Congress (2015-2016) , which would make accessibility much harder to get for people with disabilities, delay the ability to have our Civil Rights enforced, and would charge us with criminal penalties for not following the bill’s onerous and restrictive process.

Typically, this bill with a cuddly name is a Trojan Horse carrying mayhem inside. Although the bill purports to promote compliance with the ADA through education, it violates the Civil Rights of accessibility and accommodation granted to people with disabilities by the ADA.

The National Council On Disability, the federal agency which advises the federal government on disability rights and issues, but which has no enforcement authority, has stated: “This proposed provision would be unique in civil rights law, and would have a chilling effect on anyone aware of this provision. Ironically, an innocent person with a disability who simply wanted to make a business owner aware of a violation of a well-settled 26-year old law might unwittingly violate this new notice requirement and face a stiff penalty while a business owner is free to flout the access requirements of the ADA. This sort of imbalance is certainly not in keeping with original Congressional intent which already took all parties’ interests into consideration against the backdrop of an individual’s inalienable civil rights.”

The full statement of the NCD to the U.S. House of Representatives Judiciary Committee, Subcommittee on the Constitution regarding this bill can be read using this link:

The bill prohibits persons with disabilities from, and subjects violators to a criminal fine for, sending demand letters or other pre-suit notifications alleging a violation of ADA public accommodation requirements if the notification does not specify the circumstances under which an individual was actually denied access. The notification must specify: (1) the address of property, (2) the specific ADA sections alleged to have been violated, (3) whether a request for assistance in removing an architectural barrier was made, and (4) whether the barrier was permanent or temporary.

The bill restricts how notifications of violations of the ADA and requests for accessibility can be given by people with disabilities, making it impossible for the person with disabilities who encounters an illegal barrier to negotiate an immediate or timely cure by demanding their rights without prior written notice, they would be subject to criminal penalties.

The bill requires that the specific sections of the ADA alleged to be violated be cited by the person with disabilities, which means that in most cases a legal advocate would have to be consulted before such a notice could be written, however any legal action would be delayed until the new onerous process is completed. There is a severe lack of legal services for people with disabilities as it is, whether through Protection and Advocacy services required by the federal government, Legal Aid Societies, or even disability organizations. Many people who are blind, deaf, cognitively or mobility impaired could not write a notice as required by this bill without finding help to do it, while most could assert their rights in many other ways according to their differing abilities, as is our Civil Right.

On May 19, 2016 The U.S. House of Representative Judiciary Committee, Subcommittee on the Constitution, held a hearing on this proposed draconian legislation, yet unlike many other Civil Rights issues in our country involving race, gender, or sexual preference, there was nothing reported in the media about this assault on disability rights other than in the world of the separate but supposedly equal disability community.

The ADA Education and Reform Act is not the only such bill attacking disability rights. “A number of bills, like the ADA Compliance for Customer Entry to Stores and Services (ACCESS) Act, H.R. 241, sponsored by California Congressman Ken Calvet, have been introduced in Congress that would create barriers to the civil rights for persons with disabilities that do not exist in other civil rights laws. These bills seek to limit the power of the ADA and reduce compliance with the law. The ACCESS act is one of these bills that will go back on the compromises made between the business and disability communities during passage of the ADA”, wrote the Consortium For Citizens With Disabilities and 17 other national disability organizations in written testimony to the House Judiciary Committee.

The full statement of the Consortium For People With Disabilities to the U.S. House of Representatives Judiciary Committee, Subcommittee on the Constitution regarding this bill can be read using this link:         

Having been involved, starting in 1955, in the Civil Rights movement, I have come to recognize the ingrained pervasive prejudice towards people with disabilities in this country as well, and almost all people with disabilities would agree with me on that. This pervasive denial, indifference, ignorance, neglect, abuse, and violations of people with disabilities, which no one, not even the progressive news media, wants to talk about, is to me very similar to the public attitude prior to the rise of fascism in Germany in the 1030s. It is no surprise to me that Donald Trump has such popularity in this country, for I have seen this fascism growing for years.

For years I have asserted that the best way to truly arrive at equality for people with disabilities is through a massive media and public education effort to remove the ignorance so that people understand what the rights of people with disabilities are, understand the conditions and needs of the diverse forms of disabilities, and learn how to be helpful in ways that do not demand much time or energy. Until the darkness of that pervasive ignorance is removed by the light of understanding, violations of the rights of people with disabilities and marginalization of us as second class citizens will continue.

It is very disheartening that there are 5 Democratic Representatives among the 31 co-sponsors of this bill. I encourage folks to stand up and speak out for your sisters, brothers, neighbors, and friends with disabilities. Let these members of Congress know that criminalizing people with disabilities is a crime unto itself.

Here is a list of Representatives who are co-sponsors of the ADA Education and Reform Act of 2015 (H.R.3765) :

Rep. Poe, Ted [R-TX-2] Sponsor


Rep. Rangel, Charles B. [D-NY-13]

Rep. Speier, Jackie [D-CA-14]

Rep. Ashford, Brad [D-NE-2]

Rep. Rogers, Mike D. [R-AL-3]

Rep. Peters, Scott H. [D-CA-52]

Rep. Collins, Doug [R-GA-9]*

Rep. Jolly, David W. [R-FL-13]*

Rep. Marchant, Kenny [R-TX-24]

Rep. Smith, Lamar [R-TX-21]

Rep. Mulvaney, Mick [R-SC-5]

Rep. Nunes, Devin [R-CA-22]

Rep. Denham, Jeff [R-CA-10]

Rep. Babin, Brian [R-TX-36]

Rep. Byrne, Bradley [R-AL-1]

Rep. Valadao, David G. [R-CA-21]

Rep. Burgess, Michael C. [R-TX-26]

Rep. Ros-Lehtinen, Ileana [R-FL-27]

Rep. Schweikert, David [R-AZ-6]

Rep. Emmer, Tom [R-MN-6]

Rep. Cole, Tom [R-OK-4]

Rep. Olson, Pete [R-TX-22]

Rep. Amodei, Mark E. [R-NV-2]

Rep. Conaway, K. Michael [R-TX-11]

Rep. Hensarling, Jeb [R-TX-5]

Rep. Graves, Sam [R-MO-6]

Rep. Carter, Earl L. “Buddy” [R-GA-1]

Rep. Russell, Steve [R-OK-5]

Rep. Johnson, Sam [R-TX-3]

Rep. Luetkemeyer, Blaine [R-MO-3]

Rep. Coffman, Mike [R-CO-6]

Rep. Buck, Ken [R-CO-4]

Here is a list of Representatives who are co-sponsors of H.R.241 – ACCESS (ADA Compliance for Customer Entry to Stores and Services) Act of 2015:

Rep. Calvert, Ken [R-CA-42] Sponsor


Rep. Ashford, Brad [D-NE-2]

Rep. Hunter, Duncan D. [R-CA-50]

Rep. McClintock, Tom [R-CA-4]

Rep. Denham, Jeff [R-CA-10]

Rep. Rohrabacher, Dana [R-CA-48]

Rep. Royce, Edward R. [R-CA-39]

Rep. LaMalfa, Doug [R-CA-1]

Rep. Issa, Darrell E. [R-CA-49]

Rep. Valadao, David G. [R-CA-21]

Rep. Cook, Paul [R-CA-8]

Rep. Walters, Mimi [R-CA-45]

Rep. Nunes, Devin [R-CA-22]

Rep. Jenkins, Lynn [R-KS-2]

Rep. Simpson, Michael K. [R-ID-2]

Rep. Westmoreland, Lynn A. [R-GA-3]

Rep. Burgess, Michael C. [R-TX-26]

Rep. Coffman, Mike [R-CO-6]

Rep. Harris, Andy [R-MD-1]

Rep. Conaway, K. Michael [R-TX-11]

Posted in ADA, Americans With Disabilities Act, Disabilities, Disability Laws, Disability Rights, National Council on Disability, People With Disabilities | Leave a comment

Public Comment To The National Council On Disability, May 2016

Public Comment To The National Council On Disability
May 6, 2016

Dear Members of the National Council On Disability and all in the disability community,

The challenges which our community faces in our attempt to achieve the equality promised by law to us in the ADA, in the Rehabilitation and Workforce Acts, and in the Olmstead decision are still pervasive and persistent across the nation. The community of people with disabilities is comprised of people of all ages with many different types of disabilities, all presenting unique challenges for each of us. The task of establishing disability rights comprehensively for all in our community will take many more years, so as we examine the details of very specific disability issues, let us not lose perspective of the widespread problems overwhelming our community and keep part of our focus always on how major systemic improvements in areas such as protection and advocacy, and in public awareness will significantly contribute to improving mental health services and workforce challenges.

With that in mind, as a person with Mild Traumatic Brain Injury and with one eye Congenitally Blind, who has struggled for a decade and a half to return to basic productivity as a horticultural professional, suffering enormous mental duress in the process, I appreciate the opportunity to make my comments to you for the record.

“Mental Health Services in Higher Education”

One of the keys for unlocking the problems of mental health services in higher eduction is through creating a much broader awareness of disability rights and, diverse needs for assistance the disability community are entitled to, and the accommodations and accessibility which should be provided for our equality.

Students in higher education who are struggling with mental or cognitive disabilities are often not believed when they say they have a problem or problems because those disabilities can not bee seen, resulting in worse mental health for the person seeking help. Broadening public awareness would provide much remedy for millions of us.

One of the most important realities of cognitive, mental, developmental, neurological, and other related disabilities which needs to be made better understood in the delivery of services is that adverse situations, bureaucratic processes, and disrespect for our needs creates mental damage, making our condition and functioning worse. Although all people suffer from mistreatment of one kind or another, the negative impact of that violative behavior on those of us with cognitive and mental disabilities is more severe and damaging. The damage is often cumulative and we often begin to develop systemic PTSD as a result.

As Molly Ivins said, ” you couldn’t make this stuff up! “. Recently, staff for a large respected mental health foundation reached out to me through social networking to assist in a problem created by others causing me extreme duress. When I finally noticed the contact a couple of months later on the social network, I contacted that staff member first, and then others, including the executive director, and I never got a return call or email. You can only imagine how frustrated and hurt I felt. Shouldn’t those folks know better as mental health professionals and advocates?

“Direct Care Workforce Challenges”

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.

The difficulties I have faced from my state assistive and rehabilitation department in my attempt to return to professional self employment over the years has continued this past year by the failure to meet with me for five months for an intake as a returning client, not providing a counselor trained in brain injury rehab, and not responding at all to my several requests for ADA Accommodations. It has been a year since I asked for help and I am beginning to believe again, as I did in the past, that trying to work with an agency such as this is only subjecting me to abuse.

Worse still is that my P&A agency has not engaged on my behalf at the level of contact and negotiations I was making with senior state HHSC officials and legal department. The CAP advocate, not attorney, assigned to me insists that the P&A must start all over again at the lowest possible level. There seems to be no concern over the incredible delays in providing service, my ADA unanswered requests, and rehab staff consistently providing misinformation.


In my years of dealing with the disability system, I am convinced that the greatest two impediments to the realization of disability rights are a too unaware public, and the lack of adequate protection and advocacy, from a legal profession and system which do not seem to respect disability rights which are the law as they should. The effects of improving these areas will greatly help all including in those specific areas you address today.

It is hard to understand why the refusal by my state vocational rehab agency to grant me accessibility to an agreed upon mediation as part of a legal administrative appeal process has not been viewed as a violation of my rights of of due process by the U.S. Dept. of Education Office of Civil Rights. There are too many more.

People should be aware that I am tired, as so many people with disabilities are, of people telling me that I do not look disabled. That type of pervasive public prejudice means that we do not get the help we need nor the respect we deserve. Many in the disability community would like to see a new placard representing disability in order to remind the public that there are many types of disabilities, many which can not be seen. Attached is an image of that placard. Greater awareness of invisible disabilities is essential for better mental health for all of us who have them.

Thank you for your consideration and for all the difficult work you do,

Jake Billingsley



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White House Ignores Americans With Disabilities Act Complaint Request

September 5, 2014

Tanya Tyler
White House Office of Public Engagement
Disability Policy Advisor The White House

Dear Ms. Tyler,
This is an email sent almost a year ago, to the former White House Disability Policy Advisor, Claudia Gordon. I would like for my concerns to be brought to the attention of President Obama so that a policy response can be made to me.

October 24, 2013

Dear Ms. Gordon,

Thank you for your commitment, and that of President Obama, in respecting the civil rights of people with disabilities and for working diligently to enforce and to improve respect for our rights.

As a citizen with disabilities, I am asking that the President’s staff with assistance from the US Dept. of Justice, the National Council on Disability (NCD), all Federal Department Inspectors General, and Committees of the US House and Senate, to resole a question : “If a citizen with disabilities wishes to file an administrative disability civil rights complaint against an agency of a federal department, to which federal authority is that complaint to be addressed ?”

The advice I have received from both the US DOJ and the NCD is that the Inspector General of the department of the agency is that authority. However, the Inspectors General of both the Dept. of Education and HUD have declined my request to accept such a disability civil rights complaint, and Mr. Galanter of the U.S. Dept. of Education Office of Civil Rights also seems to reject the advice given me. It is important that our federal government have a consistent and fair policy so that the civil rights of all can be better respected and thus improve the quality of our government. Although the Inspector General of the Dept. of Education has asked Mr. Galanter to review my cases for fraud and corruption, that review does seem to have been adequately addressed by Mr. Galanter.

Additionally, as you are aware, I have other concerns as to why the Dept. of Education OCR has not found that my disability civil rights were violated when : 1) My state rehab services agency denied me accessibility to an agreed upon mediation, 2) my state rehab agency promised my CAP agency as well as Texas HHSC Civil Rights Office investigators that a specialist in TBI rehab would be provided for me, though that promise was quickly broken, and 3) the attorney for my state rehab service agency named my long time counselor at my CAP agency as a witness and had the counselor removed from an Administrative Appeals Hearing, over the objections of my attorney since my counselor was both assisting my recently appointed attorney and was representing me in person since I was attending the hearing telephonically. My counselor was never called as a witness and this tactic by the state’s attorney seems to have been used to deprive me of representation.

There are quite a few other complaints which I have about my state agency, in one instance their actions threatened by life, health, and well being, though I will not elaborate on those since the three actions cited are viewed as easily discernible disability civil rights violations by the vast majority of the disability rights legal community. Attached to this emai is a pdf containing a similar request for clarification made to the NCD, and as well the thread of email correspondence between Mr. Galanter and myself regarding these matters which have been copied to you and Mr. Carter-Long at the NCD. It is my view that denying a person with TBI a counselor trained in TBI rehab is equal in violation to a person who is deaf being denied a counselor trained in ASL, that giving false or misleading information to investigators is a crime, and that depriving me of the representation of my counselor at a legal hearing is both an ADA violation and violates basic due legal process.

Thank you for your concerns regarding such matters, and I hope that the result will be that improvements are made in the process of protecting and respecting the rights of all citizens with disabilities in our government and in society as a whole. Most disability activists feel that equality for people with disabilities is still a generation away, and that much work must be done yet to insure that day arrives.


Jake Billingslely

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In July we will celebrate the 25th anniversary of the Americans With Disabilities Act, yet equality for people with disabilities is in reality still a generation away in the future, especially for those of us with brain injury and other cognitive disabilities such as developmental and mental disabilities, and autism. I hope this article will continue to broaden public awareness and to give validation to those struggling to live life with brain injury.


This article from therapist Luann Jacobs is the most concise and comprehensive description of Mild Traumatic Brain Injury that I have read, as a MTBI survivor. MTBI can be caused by strokes, wounds to the brain, tumors, diseases, concussions (whether from explosions, contact sports such as hockey and football, auto accidents, or falls), and anything which compromises the circulatory or neurological functions of the brain. 

At the onset of my brain injury due to a stroke, now 14 years ago, I had to learn to walk again, read again, use the telephone again, and do almost all the daily and other tasks of life too.

It is impossible to imagine, no matter how intelligent and creative one might be, just how overwhelming this challenge is. It is impossible to know the constant fatigue, exhaustion, frustration, and pain which must be endured daily still. It is impossible to know of all…

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