Failures Of Medicaid Privately Managed Health Care Corporations In Texas and Of The Texas Health and Human Services Commission To Provide Adequate Care and Disability Services – Official Testimony April 23, 2018

April 23, 2018

To the Texas House of Representatives Human Services Committee
Representative Richard P. Raymond Chair
Texas State Capitol 1100 Congress Ave.
Austin, Texas 78701
Sent via email to Committee Staff:

Citizen Statement submitted via ADA Accommodation For Hearing File
Re: Hearing on Interim Charge 2 – A Review of Managed Care In Texas

Dear Chair and Committee Members,

Thanks for your attention to my concerns regarding Medicaid and the negative impact managed care has had on me personally, the deteriorated quality of care, the cruel cost of that I bear as result, and the unnecessary costs that private, for profit, managed care organizations pass on to the taxpayers.

My concerns also include the failure of my managed care organization, Superior Health, to improve the coordination and quality of care despite my complaints to them as a person with complex disabilities.

The oversight by the Human Services Commission of my MCO has been very poor, needs many improvements, and in fact the HHSC itself has been disrespectful of my Disability Civil Rights, my condition and needs, and the risk to my health, safety, well being, and indeed my life as a result of HHSC failures and adversarial mistreatment of me.

I am a senior, native Texan, living alone in rural Llano County, trying to survive on Social Security payments of $750 per month (one third below the poverty level), with the Cognitive Disability of Brain Injury since 2001, and being congenitally blind in one eye with a hole in the retina of the other eye, Unless you have a Cognitive Disability, or have a close relationship with someone who does, unfortunately, no matter how hard you might try, this condition and its challenges are unimaginable to almost everyone, especially with my visual disabilities and poverty.

This pervasive public and systemic lack of understanding of Cognitive Disabilities becomes a second disability for those of us so afflicted. We all to often hear “but you don’t loo disabled”, and we are not likely to get the help we deserve faced with such prejudice ( See that attached mulit-disability logo which I feel would help alleviate this prejudice ). Not only that, but the normal systemic problems and adversity of trying to get help actually cause damage to the functioning of those of us with Cognitive Disabilities, create cumulative trauma and PTSD, leading all too often to tragedy. People with other kinds of disabilities do not have their disabilities made worse trying to navigate our inadequate, overly complex, and dysfunctional human services system, even though they might be treated unfairly. I have met so much systemic and other adversity in the past 17 years that although I desperately need help, I can no longer subject myself to the systemic abuse, it has done me too much damage. I feel like a woman who has been told that she should return to the home of her abusive spouse in order to put a roof over her head. I can no longer endure adversarial bureaucratic process which consumes much time and energy to only get a small crumb of the whole loaf of bread of services I need. I have been too abused for too long by the system.

When I hear talk of “cost containment”, I wonder if the cost of human pain and suffering is being included in that equation. Many of us are hurting physically, emotionally, and financially because it seems that “cost containment” is a higher priority than providing adequate, efficient, effective, and respectful social and medical services to meet our needs. We are not beans to be counted, we are human beings in pain. I am tired of being told that I, and others, can not be provided with adequate legally mandated services because our state and society can not afford to provide what are essentially my civil rights as a person with disabilities.

I have been left without the Personal Home Care I should be receiving for more than two years now, 1 1/2 years of that having been approved, yet none of those with the responsibility to make sure that I do not suffer from such neglect are doing a thing about it, including the Commissioner of the Texas HHSC, the Chief General Counsel of the Texas HHSC, Superior Health MCO, CDS in Texas, Disability Rights of Texas, my State Representative and Senator, and others. Overall, it has been impossible to get the health care and human services which are essential for me to continue to survive, even though those health and support services to assist me in living independently in my home as a person with disabilities are mandated by the U.S. Supreme Court Olmstead decision, which according to the Olmstead Rights Organization is not yet fully complied with by any state in the nation 19 years after it became the law, it is not just a Texas problem.

My request for a decade and a half to have the assistance of a Social Worker or Case Worker in navigating the system and other life challenges has not been honored, nor have I received help with mail, filing, and paperwork which is impossible for me to do adequately as I was once able, and which I have long asked for. The role of Social Worker or Case Worker is not and can not be fulfilled by an employee of my MCO because that would create a conflict of interest when dealing with problems with my MCO. In addition the structure and contract of the MCO can not provide other help needed from sources outside the tiny box of the system. I have been caught in between the HHSC which says such Social Work is to be done by my MCO, which does not do this, and even at times have claimed that they do not do social work.

If I had such a Social Worker or even my old DADS Case Worker, I would not have been left without PHC services for two years now. DADS workers usually assessed me annually by phone after their initial intake visit, the new service contract was in place that day or the next. On the other hand, Superior sends out a nurse each time, an all day expensive job, and can not compete the contract in less than a week and it has taken as
long as a month to get a new contract in place. That it neither cost effective nor quality service. Those of us with long term disabilities should not be subjected to over assessments, which are traumatizing to us and an unnecessary expense for taxpayers.

Superior Health has failed to provide adequate service coordination, has failed to communicate, has provided false information numerous times, has treated me rudely and without respect for my disabilities, has spent time on things it can bill the state for which do nothing for me, has failed to put service contracts in place in a professional and timely manner, and has failed to follow up for several years now on procuring the special protective lens eyeglasses I need to protect my remaining eye as well as correcting my vision. I can not trust them or any MCO to manage my health care adequately.

This neglect of me by RNs of Superior MCO, in my opinion, violates a number of Texas Board of Nursing Standards of Nursing Practice for all nurses per per Board Rule 217.11 including :
(1)(A)- know and conform to the Texas NPA and the board’s rules and regulations as well as all federal, state, or local laws, rules or regulations affecting the nurse’s current area of nursing practice.
(1)(B)- implement measures to promote a safe environment for clients and others o (1)(G)- obtain instruction and supervision as necessary when implementing nursing procedures or practices.
(1)(H)- make a reasonable effort to obtain orientation/training for competency when encountering new equipment and technology or unfamiliar care situations.
(1)(L)- provide, without discrimination, nursing services regardless of the age, disability, economic status, gender, national origin, race, religion, health problems, or sexual orientation of the client served.
(1)(P)- collaborate with the client, members of the health care team and, when appropriate, the client’s significant other(s) in the interest of the client’s health care;
(1)(Q)- consult with, utilize, and make referrals to appropriate community agencies and health care resources to provide continuity of care;
(1)(R)- be responsible for one’s own continuing competence in nursing practice and individual professional growth.
(1)(T)- accept only those nursing assignments that take into consideration client safety and that are commensurate with the nurse’s educational preparation, experience, knowledge, and physical and emotional ability.

Having filed a complaint against some RNs at Superior MCO stating such, the reaction of Superior MCO has been to cease communicating with me, and ceased professionally managing my Medicaid services though I am still officially a client. That could be viewed as retribution for filing a complaint.

It is my opinion that Superior and other MCOs have encouraged people with disabilities, who became a large new consumer pool for them, to apply for Medicaid Disability Waivers, which in reality we were not likely to get, but for which the MCOs got paid nursing and assessment fees. If it is possible to find the number of applications and rejections for Medicaid Disability Waivers during the past decade or so, I think it will reveal a spike in applications when the MCOs took over, and a corresponding spike in rejections. Although my physician signed in the affirmative that I needed institutionalization or to be provided with Community Care services under Medicaid Disability Waivers instead, my application for waivers was denied because I do not need regular nursing care. How much did Superior get for putting me through this traumatic experience? Most people with disabilities do not need regular nursing care, but we do need habitation and other services available only through waivers.

The “team” Service Coordination practiced by Superior does not provide an adequate monitoring or provision of services needed by folks with multiple needs such as myself when frequently rotating, different team members have to read up on the charts before they can act and without an ongoing single case worker type relationship a “team” can not effectively address the nuances of needed care. Also Robo calls from Superior requesting that I do a health assessment may earn them a fee, but they do nothing for me at all and are irritating, especially when received in the evening hours.

In the email containing this statement to you, see the attachments of and ADA Title II Complaint and Request For Mediation, which I made to the General Counsel of the Texas HHSC and the replies. The General Counsel has essentially refused my request, responded with much faulty information, and made false promises about supporting efforts to provide me with a Social Worker through Mental Health rather than through Medicaid. Is it really acceptable to this committee and the citizens of Texas for such a senior HHSC official to make false promises to a person with disabilities whose needs are served by the HHSC?

I hope this Committee will investigate and monitor this situation, not only for my sake, but for the sake of all 3 million plus Texans with disabilities, approximately half a million or more with Brain Injury or Cognitive Disabilities, who are being less than adequately served by the HHSC. Disability Rights of Texas can not adequately protect our rights to such services when it is granted only $10,000 per year to do Brain Injury casework.

As for Medicaid funding and costs, it would likely be disastrous for me and all people with disabilities to change to block grant funding of Medicaid, the system is already broken and that would only make it worse. An article in Forbes magazine last year cited an editorial published in the New England Journal of Medicine (NEJM), which stated, “If Medicaid were shifted to block grants, funding that states receive to provide services would decrease.” It went on to say that with block grants, states would be able to dictate more who gets services and which services they get rather than having to provide certain services to specific populations. The article also stated that “States might also be able to put caps on enrollment in the programs, so that even people who are eligible might not be allowed to enroll. That’s a considerable threat to the 2 % in this country who are autistic, for example, or to the 1 in 4 adults who will at some point in their lives have some kind of disability, especially given the rates of underemployment and unemployment in these groups. States also could simply skirt requirements to cover behavioral health services, which are the key services that autistic people need. The upshot would be fewer people covered and covered people receiving less coverage.”

There are manly ways to improve services for people with disabilities, including better social work and coordination of services beyond Medicaid and dealing with housing, utilities, appliances, and other needs not addressed by Medicaid, see the attached Statement I made to the National Council On Disability last year which discusses some of those changes.

Please do not make the mistake that many do of saying or thinking that I am too intelligent to be disabled. Until his recent death Stephen Hawing was one of the most intelligent people on this planet, but without folks to bathe, feed, and care for him, his death would have come much sooner. It takes an incredible amount of time, energy, persistence, computer screen magnification, spell check, etc. for me to do this. It is a very substantial effort and my own needs are traded off to do it.

Thanks again for your time and concern I and so many others deserve better with your help

Jake Billlingsley
Llano, Texas

408px-Disability_symbols_svg

My Public Comment To The National Council On Disability – Feb. 23, 2017

https://llanojake.wordpress.com/2017/02/24/my-public-comment-to-the-national-council-on-disability-february-23-2017/

ADA Title II Complaint & Request For Mediation To The Office Of The General Counsel Of The Texas Health and Human Services Commission – July 31, 2017

To:
Maureen McCarthy Franz
Deputy Chief Counsel
General Law & Administration
Health & Human Services Commission
Sent via Email

Ms. Franz,

Title II of the ADA requires equal access to state programs and services for people with disabilities, and to such programs of affiliated organizations. Due to my brain injury and half blindness, it is extremely more difficult for me to deal with the multiple agencies I must deal with to try to put together a whole and workable support service program for myself. It takes me significantly longer to find, read, and deal with information and because of my condition, it creates far more anxiety, trauma, and exhaustion than it does for the average person or even for many people with other forms of disabilities. That is why I have asked for a multi-disciplinary social or caseworker to provide me with equal access to state, local, and other services for more than ten years, though one has never been provided..

The Texas HHSC Office of Acquired Brain Injury asserted to me two years ago that they were working with other state agencies to provide me with the social or case worker which I have asked the Texas HHSC to provide, yet nothing has come of that. The Texas HHSC can not turn over this request to a Medicaid MCO contractor who can not provide this service and must take the responsibility of complying with my request. Superior Helath MCO has failed repeatedly for two years to provide me with accurate information, respectful interaction, and with adequate service coordination. The Texas HHSC cam not expect me to deal with MCOs which do not adequately respect my condition, needs, and rights as a person with disabilities, and which have treated me in an unprofessional manner.

I have been without in home care for 16 months even though there is a current contract in place, yet no one has assisted in curing this, not the Medicaid CMO, not Texas HHSC, not Texas Voc Rehab, not my State Representative, not CDS in Texas, and not Disability Rights of Texas, my P&A agency which was representing me when asked all in June 2016 for assistance with getting a new attendant in place. To no avail I reminded all in the subsequent months that I was still without help.

I feel that this violates my Title II rights, drives me closer to institutionalization ( a violation of the Olmstead Mandate ), and deprives me of critical life services as well as assistance with becoming productive again as an agricultural professional ( a violation of the Commerce Act ). I would not be without in home care services now if the state had provided the social worker which I have asked for and which the Office of Acquired Brain Injury indicated would be provided. The state looks to the Service Coordinators at the MCOs to do this work, but they can not and have not. I am being batted back and forth between the two, and between various Texas State agencies in a manner which inflicts more damage on me and puts my life at greater risk.

There are collateral complaints and more detailed complaints involved with all this as well.

Therefore I request that the Texas HHSC provide me with the social or case worker I have long needed and asked for. I also ask the Texas HHSC to begin a timely, good faith dialogue and negotiation or mediation to resolve this long standing matter which is now putting my life at risk.

Your replay within 10 days is requested. I am seeking supporting letters in this regard from legal organizations and attorneys.

Please reply via email to accommodate my disabilities.

Sincerely,
Jake Billingsley

Revision – August 1, 2017
This complaint is not a complaint to the HHSC Civil Rights Office, which overly limits the scope of its investigations, it is a notice to the HHSC General Counsel’s Office of an intent to take legal action in regards the current and other associated violations. It is a request to pursue a resolution of these matters in a less litigious way and thus is not the business of the HHSC Civil Rights Office, but the duty of the General Counsel.

Since the federally mandated Protection and Advocacy is not being provided to me by the agency the State of Texas has designated to do that, I request that the HHSC provide resources to engage an attorney to adequately represent me in these matters as I am due.

I am asking that a Social or Caseworker be similarly provided.

I am asking that the brain injury rehab therapist trained in self employment be provided as promised, yet not provided.

There are other things I am asking to be done in this complaint , similar to my asking your office for ADA Accommodations, and these request are not the duty of the Civil Rights Office to address.

I look forward to working with you in good faith to resolve these issues, meanwhile I an reaching out to legal and other organizations for representation in a lawsuit or to write letters of amicus, concerns, and support.

This continues to put my life at considerable risk.

……………………………….

Note that all my legal ADA requests were denied by the General Counsel, who also made false promises of supporting HHSC staff who felt I could be provided, under Mental Health Programs rather than Medicaid, with the Social Worker I have asked for now for more a decade and a half.

Do lawmakers and society at large think that it is acceptable for the General Counsel of the Texas Health & Human Services Commission to make false promises to a person with multiple disabilities served by the commission?

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Posted in Abuse, Abuse of People With Brain Injury, Abuse of People With Disabilitis, Acquired Brain Injury, ADA, ADA Title II Complaints, Americans With Disabilities Act, Brain Injury, Case Workers, Civil Rights, Cognitive Disabilities, Disabilities, Disabilitiy Civil Rights, Disabilitiy Rights of Texas, Disability Laws, Disability Rights, Disabillty & Poverty, Ethics & Morality, Fauilure of Protection and Advocacy Agencies, Fedeerally Mandated Protection and Advocacy, Lack of Legal Services For People With Disabilities, Medicaid Block Grants, Medicaid Community Care Services, Medicaid Cost Containment, Medicaid Disability Waivers, Medicaid Mangaed Care Organizations, Medicaid Service Coordination, Multiple Disabilities, National Council on Disability, Olmstead Mandate, Patients' Rights, People With Disabilities, Pivatized Medicaid Servies, Politics, Protection and Advocacy Agnecies, Protection and Advocacy Inadequate For Peoople With Disaabilities, Social Workers, Standareds of Nusing Practice, Texas Heath and Human Services Commission, Texas Houser of Representatives Human Services Committee, Traumatizing People With Disabiliteis, U.S. Supreme Court Olmstead Decision, Violations of ADA Rights, Violations of Olmstead, Violations of Standards of Nursing Practice | Leave a comment

Criminalizing People With Disabilities: The Ugly Face Of Anti-Civil Rights Legislation In The USA

The ADA Education and Reform Act of 2017, H.R. 620, was first introduced by Republican Texas Congressman Ted Poe several years ago and opponents of disability civil rights have kept it kicking around in the halls on Congress since then. Even though this bill has been long and widely opposed in previous Judiciary Committee hearings, the current Committee on the Judiciary approved it at the end of January 2018 and it could be voted on by the House of Representatives on February 15, 2018.

This repressive bill is opposed by 99% of Americans with disabilities because it 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.

ACT NOW ! Here are links to the bill and its co-sponsors. Please contact your representative in Congress and the sponsors of the bill and voice your opposition today.

H.R. 620 – Congress.gov
https://www.congress.gov/bill/115th-congress/house-bill/620

Co-Sponsor of HR 620: https://www.congress.gov/bill/115th-congress/house-bill/620/cosponsors

Here are many of the recent statements from disability organizations and even the U.S Department of Justice Office of Civil Rights opposing this anti-disability civil rights bill:

• Myths and Truths About the “ADA Education and Reform Act” (H.R. 620) – Paralyzed Veterans of America, Bazelon Center for Mental Health Law, and American Civil Liberties Union
https://dredf.org/wp-content/uploads/2017/08/myths-and-truths-about-the-ada-education-and-reform-act.pdf

• Overview of concerns with H.R. 620 – Disability Rights Education and Defense Fund
https://dredf.org/2017/04/03/overview-of-concerns-with-h-r-620/

• ADA Notification Legislation – Paralyzed Veterans of America
https://dredf.org/wp-content/uploads/2017/08/pva-fact-sheet.pdf

• Save The ADA: Resources to Combat ADA Notification Bills – Consortium for Citizens with Disabilities
http://www.c-c-d.org/rubriques.php?rubpage=43

• Comments on H.R. 620 – US Department of Justice, Civil Rights Division
https://dredf.org/wp-content/uploads/2017/06/DOJ-Comments-on-HR-620-9-11-17.pdf

• Save the ADA webpage – National Disability Rights Network
http://www.ndrn.org/en/public-policy/ada-a-civil-rights.html

• Letter of Opposition to H.R. 620 – National Disability Leadership Alliance
https://www.aapd.com/wp-content/uploads/2017/10/NDLA-HR-620-Opposition-Letter_Final-10_5.pdf

• Letter of Opposition to H.R. 620 – National Council on Independent Living
https://www.aapd.com/wp-content/uploads/2017/10/NCIL-Opposition-Letter-The-ADA-Education-and-Reform-Act-of-2017-Oct.-2017-.pdf

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: http://www.ncd.gov/newsroom/2016/written-submission-house-judiciary-committee-ada-notification

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: http://www.c-c-d.org/fichiers/CCD-Rights-TF-Letter-of-Opposition-for-HR241-May2016.pdf

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 a dozen Democratic Representatives among the 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.

#HandsOffMyADA

 

Posted in Uncategorized | Leave a comment

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.

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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 | 2 Comments

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 – An Interview 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”.

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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.

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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.

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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.

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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 Anti-Civil Rights Legislation In The USA

The ADA Education and Reform Act of 2017, H.R. 620,  was first introduced by Republican Texas Congressman Ted Poe several years ago and opponents of disability civil rights have kept it kicking around in the halls on Congress since then.  Even though this bill has been long and widely opposed in previous Judiciary Committee hearings, the current Committee on the Judiciary  approved it at the end of January 2018 and it could be voted on by the House of Representatives on February 15, 2018.

This repressive bill is opposed by 99% of Americans with disabilities because it 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.

ACT NOW !  Here are links to the bill and its co-sponsors.  Please contact your representative in Congress and the sponsors of the bill and voice your opposition today.

H.R. 620 – Congress.gov
https://www.congress.gov/bill/115th-congress/house-bill/620

Co-Sponsor of HR 620:                                                                                                           https://www.congress.gov/bill/115th-congress/house-bill/620/cosponsors

Here are many of the recent statements from disability organizations and even the U.S Department of Justice Office of Civil Rights opposing this anti-disability civil rights bill:

• Myths and Truths About the “ADA Education and Reform Act” (H.R. 620) – Paralyzed Veterans of America, Bazelon Center for Mental Health Law, and American Civil Liberties Union
https://dredf.org/wp-content/uploads/2017/08/myths-and-truths-about-the-ada-education-and-reform-act.pdf

• Overview of concerns with H.R. 620 – Disability Rights Education and Defense Fund
https://dredf.org/2017/04/03/overview-of-concerns-with-h-r-620/

• ADA Notification Legislation – Paralyzed Veterans of America
https://dredf.org/wp-content/uploads/2017/08/pva-fact-sheet.pdf

• Save The ADA: Resources to Combat ADA Notification Bills – Consortium for Citizens with Disabilities
http://www.c-c-d.org/rubriques.php?rubpage=43

• Comments on H.R. 620 – US Department of Justice, Civil Rights Division
https://dredf.org/wp-content/uploads/2017/06/DOJ-Comments-on-HR-620-9-11-17.pdf

• Save the ADA webpage – National Disability Rights Network
http://www.ndrn.org/en/public-policy/ada-a-civil-rights.html

• Letter of Opposition to H.R. 620 – National Disability Leadership Alliance
https://www.aapd.com/wp-content/uploads/2017/10/NDLA-HR-620-Opposition-Letter_Final-10_5.pdf

• Letter of Opposition to H.R. 620 – National Council on Independent Living
https://www.aapd.com/wp-content/uploads/2017/10/NCIL-Opposition-Letter-The-ADA-Education-and-Reform-Act-of-2017-Oct.-2017-.pdf

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: www.ncd.gov/newsroom/2016/written-submission-house-judiciary-committee-ada-notification

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: http://www.c-c-d.org/fichiers/CCD-Rights-TF-Letter-of-Opposition-for-HR241-May2016.pdf         

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 a dozen Democratic Representatives among the 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.

 

 

 

 

 

 

 

 

 

 
 
 
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.

Conclusion

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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