A Juneteenth Memory

My first involvement with the Civil Rights Movement came in 1955 when my dad was assigned as the clergyman to an all African -American Episcopal Church in Austin, Texas. We were the only White family in an all Black Church. What I witnessed then sticks with me to this day and brought my childhood to an early end. I have actively advocated for all human rights and inclusion ever since.

Some decades later, in 1984, I came to live in the Clarksville National Historic District in Austin, one of only two African-American National Historic Sites, the other being the birthplace of Dr. Martin Luther King Jr.  Clarksville is said to be the first Freed Slave Community west of the Mississippi River.  In 1865 Texas Governor Elisha Pease deeded some of his land to his freed slaves, followed in 1871 by the purchase of some of Gov. Pease’s land by Charles Clark, a freed slave, who subdivided his purchase with other freed slaves, which is considered the official founding of Clarksville, which has an incredible history of creating progress out of slavery.   During the 23 years I lived in Clarksville, the historic African-American population of the Clarksville Community was being decimated and displace by gentrification at an increasing rate, which Jim Crow plans and efforts had failed to do.  There was a lack of equitable funds for neighborhood parks and community center,  code violating development, and an illegal sale of community owned, low income, neighborhood housing with the city participating in that skullduggery.

The name Clarksville was often used to describe a larger area than the historic district, including an area called Old West Austin, on the “other side of the tracks” for  Clarksville residents. Even into the 1970s the “Colored” residents of Clarksville who were not welcome there unless working  for an Anglo int the neighborhood.  “Colored” residents were even harassed in the 70’s for waiting for their children at the local elementary school which sits on the border line.

Opportunities came to me to sit on the Board of Directors of the Clarksville Community Development Corporation CCDC, and on the Steering Committee of the Old West Austin Neighborhood Association, OWANA on the other side of the tracks still at that time in many ways and not interactive with the Clarksville community.  Much of my work was to get the communities to know and work with each other and I felt like Clarksville needed Old West Austin OWA as a political ally against increased destruction as a National Historic District. Over the objections of the old guard in OWANA, I was successful in getting the its Steering Committee to hold its monthly meetings in a public place, in the Clarksville Neighborhood Center rather than in the private homes of affluent residents, a practice which continued even after I was out of political favor with the upper crust.

The City of Austin established official Neighborhood Plans thru stakeholder elected Neighborhood Planning Teams circa 2002-03. Stakeholders in the Neighborhood Plans were defined as residents, property owners, and businesses within the official neighborhood plan area. The preliminary meetings for the OWA Neighborhood plan, whose name I got changed to the Old West Austin / Clarksville Neighborhood Plan, were being held in in private homes of the rich and influential not as announced public meetings. I became officially recognized Ad Hoc Co-Chair of the Neighborhood Planning Team by the OWANA Steering Committee, the Clarksville Community Development Corporation, and the City of Austin Neighborhood and Community Development Department, then later became Ad Hoc Chair, and had the task of forming an elected Neighborhood Planning Team with Bylaws. I immediately required that all Neighborhood Plan Meetings be given broad notice of and held in a public place, the Clarksville Neighborhood Center. There was a lot of meanness coming from a powerful few on the other side of the tracks.

It was on the morning of Juneteenth in 2005, a Saturday, at the Clarksville Community Center that Officers were officially elected and Bylaws passed for the Old West Austin-Clarksville Neighborhood Plan Team, I was elected Chair.  We reviewed, discussed, and amended the Bylaws giving all a chance to participate. I had organized the meeting well, stuck to businesses, and we were done in about an hour and a half, so everyone could celebrate Juneteenth. Some said it was the best meeting they had ever attended.

It did not take long for the upper crust to attack the legitimacy of the well noticed meeting, claiming adequate notice had not been given, even though a notice had been published in their own OWANA newsletter, and in man other public places.

At first City Staff stood behind the legitimacy of the proceedings, but under relentless pressure from the powerful, rich, elite, and businesses, many of which were not Stakeholders, the City retreated and by late August I had been deposed just like so many who are democratically elected in oligarchical controlled governments and our Bylaws were thrown out.  One of the powerful and rich scallywags involved in this coup, soon got elected to the Austin City Council.

What was put in place of a neighborhood wide elected Neighborhood Plan Team was your old fashioned Troika, not elected by all neighborhood Stakeholders per their right to vote in the Neighborhood Plan election of officers and proceedings. One of the Troika was elected by only the dues paying members of the OWANA, the second was elected only by the dues paying members of the West End Alliance of businesses (many not legally Stakeholders), and third and only democratically elected member of the Troika was from all who lived within the boundaries of the CCDC, though that too did not include all in the greater neighborhood.  All in Clarksville though had the universal right to vote without paying dues.  which in the case of OWANA and the West End Alliance created a Poll Tax to vote in official City of Austin Neighborhood Plan proceedings. Under the Troika regime, the Stakeholders, being all residents, property owners, and businesses in the neighborhood plan boundaries were mostly disenfranchised voters in the official Neighborhood Plan.

The really weird thing about Austin is how this kind of stuff goes on all the time and gets swept under the rug, with news media refusing to report about it.  Austin is far from being as egalitarian as it claims and has recently been named as the most economically segregated city in the US.  Like so many, I became a displaced refugee from Clarksville, to which by that time I had blood ties through a grandson of Afro-Anglo heritage.  A matriarch of the community was like an aunt to me, and my in-laws included a good many in the historic African-American Clarksville community. The City of Austin did all it could to get rid of me and did.

The City of Austin has forsworn its commitment to its citizens, neighborhoods and good sustainable planning for the greed of money from unsustainable, unbridled and irresponsibly “planned” development, which has displaced historic minorities and working class trades people, creating extreme economic segregation.

One of my most satisfying results of my efforts there was in the way the members of the Clarksville and Old West Austin began to socialize, become friends, and organize with each other, which continues to this day, with the historic Clarksville Sweet Home Baptist Church and the Clarksville Neighborhood Center being common gathering places.

Another of my life achievements from that time which I hope will stand the test of time is initiating the rescue, preservation of, and City and State Historic Landmark designations for the historic Free Slave built and owned Haskell House in Clarksville,  the featured photo in this post.

And I hope the trees I helped get planted in Clarksville Park will grow for hundreds of years providing shade and comfort to all. Someday in fifty or a hundred years I hope a pair of lovers will fall in love under one of those trees.

So on this Juneteenth, I remember and celebrate the ever vigilant work of equality, inclusion, and justice for all.

We shall all be free someday.

Watch 12 seasons of episodes of “Juneteenth Jamboree” online at the link below
Created, by Michael Emery, Producer at KLRU / PBS Austin
https://video.klru.tv/show/juneteenth-jamboree/

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Disability Issues Questionnaire For Candidates

Disability Issues Questionnaire For Candidates

– Compiled by a volunteer caucus of Citizens with Disabilities

Voting

1. How will you ensure that people with disabilities and all other Americans have free and unobstructed voting rights including access to the secret ballot?

Criminal Justice and Violence

2. What steps will you take to reduce the incidence of sexual and domestic abuse as well as other crimes against people with disabilities, and what is your plan to direct resources to support survivors with disabilities?                                                                                                   3. How will you ensure law enforcement personnel are trained to appropriately interact with people with disabilities – including people who may be non-verbal or who use a communication device, who are Deaf or neurologically diverse to ensure proper communication with victims of crimes, and prevent inappropriate actions by law enforcement personnel arising from miscommunication that may lead to injury, incarceration and/or death?
4. How would you ensure that prisoners with disabilities are properly accounted for and provided with necessary and appropriate accommodations (Communicative Devices, CARTS, sign language, protections of abuse from other prisoners, appropriate medications, wheelchair accessible, Mental Wellness, braille, etc.) throughout their involvement with the criminal justice system?

Education

5. How will you ensure that the education system meets the needs of people with disabilities?                                                                                                                                             6. What can you do to ensure schools hire professional counselors (LCSW, LPC, School Psychologists) to help identify triggers, address anxiety, depression, abuse, etc. in all grades?                                                                                                                                                     7. What programs can be initiated for parents of people with disabilities that will provide education about disabilities, assistance with accessing benefits, services, and accommodations, and connection to peer support and counseling?                                           8. What steps would you take to address the disproportionate number of students with disabilities impacted by the school-to-prison pipeline?                                                                 9. How will you ensure students with disabilities and their families receive appropriate transition planning for post-high school options (career, college)?                                          seclusion, restraint, drugging, and physical, emotional, and/or psychological abuse?             10. Teachers who assault or abuse students receiving special education are never prosecuted and most never lose their teaching licenses or suffer any consequence at all. What will you do to stop inappropriate discipline measures from school personnel such as seclusion, restraint, drugging, and physical, emotional, and/or psychological abuse? Will you commit to requiring that school districts implement a zero-tolerance policy that mandates revoking the teaching license from any educator that assaults or harms a student with disabilities?                                                                                                                       11. Would you commit to adopting measures to ensure that students with disabilities are made aware of an included in extra-curricular activities? What data could be kept to safeguard those efforts?

Emergency Preparedness

12. How will people with disabilities be thoroughly included in the planning and implementation of emergency preparedness efforts on the state, county, and local levels?   13. Do you plan to audit the current programs that are supposed to assist people with disabilities during emergencies to find how the programs fail? (Not enough resources during large-scale emergencies, flooding, electrical power lines down, trees blocking roadways, personal care attendants & nursing staff flee abandoning people with disabilities, seniors, veterans, etc.)

Employment

14. How would you create the infrastructure to address the underemployment rates and wage gaps specifically experienced by people with disabilities?                                                   15. Will you address and eliminate subminimum wage which people with disabilities are currently allowed to receive for performing salaried work?                                                           16. Do you support removing Medicaid limits and removing the extremely low income and assets requirements to allow people with disabilities to return to work? 17. Do you support preferential hiring for people with disabilities in city and county jobs that meet the qualifications?

Leadership

18. What are you doing to make sure qualified people with disabilities are a part of your political team and, if elected, will be hired as a paid part of your staff?                                  19. To help ensure people with disabilities are included within and throughout all levels of government, will you continue supporting establishment and or maintenance of agency outreach offices staffed by qualified people with disabilities?
20. What are your top priorities for persons with disabilities?                                                 21. What would you do to broaden public awareness about people with disabilities and our rights and to that end would you support changing the wheelchair-only symbol to one more inclusive of people with other disabilities?                                                                         22. Would you commit to ensuring that “disability training” is led by people with disabilities?

Technology and Communications Communication Access

23. What will you do to ensure the accessibility of the internet including government websites and online services?                                                                                                           24. How are you going to change the communicative barriers to 911 and other numbers for those without a phone, are deaf or speech impaired?

Transportation  

25. What would you do to expand access to affordable and accessible transportation for people with disabilities, especially in rural areas?                                                                       26. Will you push for and require that all transportation companies including ride shares be accessible to persons with Disabilities?

Infrastructure and Housing

27. Please describe how sidewalks, ramps, elevators, and other public spaces will be improved to provide public accessibility and mobility for people with disabilities.                 28. Do you plan to require that property management accept housing vouchers for people with disabilities, seniors, and veterans?                                                                                             29. How can you promote housing access to people with disabilities on fixed disability income? (These people do not meet the federal poverty level of making three times the rent, especially in areas with public transportation.) For example in large cities the median income maybe around $75,000 but people with disabilities may only get $12,000 or less.   30. How do you plan to increase the amount of safe, integrated, deeply affordable and accessible housing units for people with very low-income levels 0-30% MFI?                          31. What are your thoughts about changing the requirements for the development of site plans for multi-storied apartments to be inclusive and accessible to people with disabilities?                                                                                                                                           32. Half of the population of people experiencing homelessness are people with mental health conditions and/or disabilities. How will you use funding from HUD and other programs to end homelessness and housing insecurity for people with disabilities and mental health conditions?

Healthcare

33. If elected, would you prohibit insurance companies from denying coverage to people with pre-existing conditions?                                                                                                                 34. Will you push to expand Medicaid and will you support the addition of adult dental care?                                                                                                                                                           35. What can you do to require that all doctors accept both Medicare and Medicaid?        36. Will you advocate for the decriminalization of medicinal marijuana and make it less difficult for patients to fill their prescriptions?

Community Integration and Medicaid

37. Do you support or oppose proposals to block grant Medicaid spending or convert funding to a per capita cap system?                                                                                                     38. What Medicaid services if any, would you seek to eliminate under a block grant or per capita spending system?                                                                                                                         39. How will you improve community-based long-term services and supports for people with disabilities? And how will you shorten the wait time to obtain community-based service?                                                                                                                                                     40. Do you support work requirements for Medicaid recipients?
41. Yes No Unsure ?                                                                                                                                  42. Would you support requiring the provision under standard Medicaid of social workers, as called for in the US Supreme Court Olmstead Decision?                                                      43. Would you support establishing an independent grievance process for patients of Medicaid Managed Care Organizations?

Protection, Advocacy, and Access

44. Do you commit to holding all meetings and future campaign events in accessible locations, and including information about venue accessibility in your promotional communications and press releases?                                                                                                 45. What would you do to ensure that mandated legal services are easily accessible to people with disabilities?
46. Would you support the creation of a Disability Services Coordination Office that employed qualified caseworkers with lived-experience who are available to assist people with disabilities through the red taped, complicated programs, benefits & services both online and in-person to ensure their wellbeing is provided for?

Posted in ADA, Americans With Disabilities Act, Civil Rights, Disabilities, Disabilitiy Civil Rights, Disability Laws, Disability Rights, Disabillty & Poverty, Ethics & Morality, Medicaid, Medicaid Block Grants, Medicaid Community Care Services, Medicaid Disability Waivers, Medicaid Mangaed Care Organizations, Medicaid Service Coordination, Olmstead Mandate, People With Disabilities, U.S. Supreme Court Olmstead Decision | Leave a comment

Statement To The Texas Governor’s Committee On People With Disabilities – June 10, 2019

June 10, 2019

Texas Governor’s Committee On People With Disabilities
Aaron W. Bangor, Chair
1100 San Jacinto
Austin, Texas 78701
Sent via email to: gcpd@gov.texas.gov / Nancy.VanLoan@gov.texas.gov

Comments For June 11-12, 2019 Meeting Of Texas GCPD

Dear Chair and Committee Members,

At 70 years of age, I am living alone, disabled by brain injury from a stroke in 2001, also congenitally blind in one eye and with a hole in the retina of the other. My home and ten acres of land are in rural Llano County where I moved to 12 years ago to pursue my own rehab as a disabled small farmer, being a life long agricultural professional, formerly licensed and successfully self employed. It is a very difficult rehab, this is the type of work I love most. I can not perform or produce per my former professional standards, though the natural surroundings which are my “office” are very healing. I’ve planted a small orchard which after 6 years is beginning its mature and productive years ahead, as well as raising a few milk goats. Though I can write about this and do some things well my disabilities are more significant than most an imagine.

Unfortunately, I am very much at risk due to the failures yet of my government and society to understand the disability of brain injury, especially combined with partial blindness, and to provide adequate help and support services, even when promised. Although I was featured in the Dallas Morning News “Pain and Profit” expose a year ago about Texans being neglected, abused, and put at risk by the failures of privatized Medicaid and the HHSC, I am still without the mandated services due, at increasing risk, and have been denied legal representation by Texas Rio Grand Legal Aid, which treated me in a manner very disrespectful of and damaging to a person with my disabilities.

The HHSC Commissioner, General Counsel, Chief Policy Officer, and Director of the Ombudsman’s Office, and many members of the Texas Legislature, are all aware of my plight and have failed to adequately address the damaging mistakes made by the HHSC and it contractors. Let me put it this way, at present I am unable to do my meager monthly grocery shopping and have no one and now way to help get that done. I am also waiting for HHSC approval and coordination for protective lensed prescription eyeglasses to prevent me from going blind due to overexposure to sunlight through my damaged retina. I have been waiting 4 years for this vital protection and the Ombudsman had indicated all would be lined up in March, though it is still not. And there is more, much more.

There are many things which must change now for me and for at least 1 million of the 3.4 million Texans with disabilities so that we are not at risk and can lead simple lives independently in the community with simple reliable help. Some of the most important changes are:
– Providing adequate legal representation, protection and advocacy
– Providing adequate, well coordinated and comprehensive HHSC support services
– Broadening public, government, and businesses disability awareness
– Increasing compliance with ADA Title II requirements by governments and legislatures
– Providing inclusion through communication assistive devices, internet, and technology
– Providing sufficient housing and assistance with in home living and home maintenance
– Providing rehab training for all at the workforce, self employed, or any level of productivity
– Increasing hiring of people with disabilities in government , including the legislature
– Increasing state business contracts with disability owned businesses
– Improving emergency preparedness
– Removing unjust State Sales Taxes on Texans with Cognitive Disabilities

The Texas Legislature had a golden opportunity to address some of these and other disability issues this session, but failed to do so, such as:
– The Senate failed to act on HB 4462, which passed unanimously, which would have created a task force to study the accessibility to legal services for Texans with disabilities.
– The House Human Services Committee did not even grant a hearing to HB 3769 for the establishment of the coordination of disability services pilot program, which was blocked I am sure by the HHSC.
– Myself and others with disabilities also voiced and wrote complaints regarding not being granted equal access to the House legislative process as required by the ADA Title II. The Speaker’s Office is discussing with me an Interim Study Charge to the House Administration Committee to address these concerns.
– The House Ways and Means Committee heard, but failed to pass HB 3491, which would have granted at least 800,000 Texans with Cognitive Disabilities the same State Sales Tax Exemptions for adaptive devices and services now granted to Texans with mobility, hearing, and visual disabilities. The failure to exempt such a tax violates ADA Title II in that it denies Texans with Cognitive Disabilities the same state benefits enjoyed by others. The Committee Substitute for HB 3491 offered a much needed definition for Cognitive Disabilities.
– The Budget Conference Committee failed to cure this unfair tax revenue totaling approximately $160 million per biennium by using it to give home care attendants a pay raise as requested by the Governor and HHSC, though not funded by either the Senate or the House in their budgets.

The past 18 years have been almost constant adversity, though not without joyful moments, and the countless times I have been mistreated, violated, neglected, and abuse have caused additional trauma, ptsd, and damage to my already disabled functioning.

It is impossible for those with “normal brains” to come anywhere close to understanding life with brain injury. I am a creative, imaginative, compassionate, intelligent person, who thought he knew what being disabled was due to being blind in one eye, but I could never have come close myself to imagining or understanding a life with brain injury or other Cognitive Disabilities. So I have to be forgiving not only of my own disabilities, but also of the inability of others to comprehend what I and so many others face. How many times though do I have to hear the words, but you don’t look disabled.

The leading disabler of people under 30 is brain injury, strokes are the leading disabler of adults, and yet there are few programs and services for us and little understanding of our condition. The ADA is unique in that it requires the needs of each individual person and their disabilities and needs to be respected and accommodated, and is not a one size fits all law, the only such law as far as I know.

This uniqueness is especially true with Cognitive Disabilities, for what might work for one person with brain injury, does not work for another. There is no way that any Neurologist or government official can say what will work or what won’t and best practices can not come close to the complexities of each individual case. As Christof Koch, the chief scientist and president of the Allen Institute for Brain Science said, explaining some of the challenges involved in artificial intelligence design, “The brain is by far the most complex piece of highly excitable matter in the known universe by any measure. We don’t even understand the brain of a worm.”

I firmly believe and have suggested to lawmakers for years that all people with Cognitive Disabilities must be provided with a Social Worker or Case Worker, for that is an “adaptive device” most needed, a jogging partner, a short stop on your life team. I consider a computer, access to the internet, and IT assistance to be an essential adaptive device for me, yet this is not offered as a support service.

One of the most important, least expensive, most effective, long term ways to broaden public awareness of different disabilities would be the adoption of the new 4 part disability required signage, now being used by an increasing number of disability groups. These new signs would be phased in over a number of years and used for new construction or when old signs need replacement due to damage. Texas should lead the way, here is what it looks like:

408px-Disability_symbols_svg.jpg
We need a Texans With Disabilities Act to comprehensively, effectively, and timely address all the needed changes and improvements to disability services, regulations, requirements, and laws in the State of Texas. For example, as of now, there is no set protocol or understanding about how a state worker or agency must address a legal request for ADA Modifications.

Here are a few of the Bills authored in this session of the Texas Legislature to give an idea about legislation needed, which could be included in a Texans With Disabilities Act.

HB 2753 – Rep. Victoria Neave
Provide closed captioning at open meetings for all levels of government.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB2753

HB 3362 – Rep. Ana Hernandez
Relating to the consideration of ownership interests of certain persons with a disability in determining whether a business is a historically underutilized business for purposes of state contracting.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB3362

HB 3491 – Rep. Sheryl Cole
Relating to a sales and use tax exemption for taxable items used to assist persons with an intellectual, cognitive, or developmental disability.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB3491

HB 3351 – Rep. John Bucy III
Amend TEC 63.0013 to extend voting order priority to Texans with limited mobility by eliminating polling staff discretion.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB3351

HB 3352 – Rep John Bucy III
Expand and implement Collin County’s curbside voting plan across Texas.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB3352

HB 3769 – Rep. Yvonne Davis
Relating to the establishment of the coordination of disability services pilot program to review all state programs that provide services for individuals with a disability to determine any deficiencies in the programs; assist individuals with a disability in determining the services available and in applying for services.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB3769

HB 3774 – Rep. Yvonne Davis
Amend the Human Resources Code and expand the definition of abuse or exploitation of an elderly or disabled individual so that it is no longer solely based on an ongoing relationship.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB3774

HB 3775 – Rep. Yvonne Davis
Corrections officers must be fully trained before serving in an official capacity with individuals who are incarcerated.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB3775

HB 4125 – Rep. Celia Israel
Increase legal protections for people facing eviction.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB4125

HB 4462 – Rep. Terry Meza
Relating to the establishment of a task force to study issues affecting persons with disabilities in particular the barriers to accessing legal services for persons with disabilities, including communication, financial,
medical, and cognitive barriers.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB4462

HB 4469 – Rep. Terry Meza
The Texas Readi Act Relating to the establishment of a grant program and task force relating to disaster issues affecting persons who are elderly and persons with disabilities.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB4469

HB 4476 – Rep. Yvonne Davis
Create a civil liability for abuse and exploitation of an elderly or disabled individual.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB4476

HB 4483 – Rep. Yvonne Davis
Relating to peace officer education and training on individuals with disabilities. All aspiring peace officers must receive disability training as a requirement for graduation.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB4483

HB 3669 – Rep. Ryan Gullien
Relating to services provided to and collection of data regarding individuals with acquired brain injury.
https://capitol.texas.gov/BillLookup/History.aspx?LegSess=86R&Bill=HB3669

That’s all for now folks, I am out of breath. I look forward to further dialogue with the Texas Governor’s Committee On People With Disabilities so that the lives of millions of Texans and their families can be improved.

Thanks for your consideration and commitment

Always my best

Jake Billingsley

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Statement To General Investigating and Ethics Committee Of The Texas House of Representatives Hearing Oct. 25, 2018

Dear Chair and Members of the Committee,

There are actions this Committee and the Texas Legislature can and must take to insure that hundreds of thousands of elderly, disabled, and low income Texans such as myself get the fair shake we deserve rather than being neglected, abused, and put at risk by dysfunctional social service support, rehabilitation, and legal protection programs and systems in Texas which are mandated to help, not harm us.

One of the most important Bills which needs to find authorship and passage in the upcoming Session of the Texas Legislature would initiate a study of and make suggestions to vastly improve the severe lack in Texas of adequate legal protection and advocacy as federally mandated for all people with disabilities and as well those legal aid services needed by low income Texans. The Client Assistance Programs and Legal Aid programs which the Texas HHSC refers clients to should be the subjects or particular scrutiny as they are failing to meet the demand and too often people with disabilities are critical of the quality of those services.

This lack of access to justice is particularly exacerbated by the skyrocketing number of complaints being currently filed against the Texas HHSC and its privatized Medicaid providers. A supervising attorney for Texas Rio Grande Legal Aid, Ms. Bernadette Segura wrote: “TRLA, and specifically the Health Law Team, have limited advocate resources. After the Medicaid system was privatized in 2012, the number of requests for our services in Medicaid issues greatly increased. To address the added burden this privatized system created for our clients and thus our organization, we have developed a priority system on how to take cases.”

Thus, rather than being able to address all the legitimate complaints it is receiving, TRLA has instituted a triage system which denies legitimate complainants the legal protection due. Another TRLA directing attorney, Jose Garza wrote: “The demand for (legal) services in the public benefits arena is particularly high. We have the equivalent of 1 attorney for every 15,000 eligible clients.” How is it that the Texas HHSC can still continue in good faith to give notice to the citizens it serves that they may turn to overwhelmed TRLA or CAP programs for legal assistance if an HHSC or Medicaid decision is objectionable?

If legal protection and advocacy was sufficiently available, my life, health, and well being as a 69 year old Texan with brain injury and visual disabilities would not be continuing to be at substantial and increasing risk and deterioration due to the many failures of the Texas HHSC, Medicaid Managed Care provider Centene / Superior Health, the Texas Board of Nursing, and other agencies, including the Texas Legislature and its Committees, as well as those Texas legal aid agencies mandated, but failing to protect those of us who are most vulnerable.

This is the third statement I have submitted to this committee in the past six months, having done so in April and June, as I also have to the Human Services Committee. Unfortunately, as one of the mistreated, neglected, and abused client patients featured in the Dallas Morning News series “Pain and Profit”, I remain now for 2 1/2 years without Personal Home Care Services (10 hours per week), without the corrective and protective prescribed eyeglasses vital to protect what remains of my sight in only one eye, without assistance of an HHSC promised brain injury rehab therapist, without the assistance of an HHSC promised Social or Case Worker, and other assistance it has been recognized that I need, including help with restoring drastically cut SNAP benefits, and also remaining without any legal representation, though I have made extensive efforts to find it. In fact, I am now making a third level appeal to the Texas Rio Grande Legal Aid Board of Directors over the refusal of TRLA to provide me legal assistance, as well as voicing my complaints of unprofessional conduct by at least one attorney at TRLA. Also in fact, the top ACLU Disability Attorney in the nation has agreed with me that my ADA Title II Complaint against the Texas HHSC shows many egregious violations of my rights, the ACLU will not represent me because I do not fit their targeted case work. Few people get such an honor. I have no Disability Civil Rights as mandated by current laws and Supreme Court decisions in this state or this nation.

Had it not been for a few days of volunteer help in July and August from out of the blue, I would likely to have already succumbed to the to filthy conditions which the neglect and abuse by the HHSC and Superior Health, caused and had left me in. I am far from being stabilized though and with no regular needed help, I feel as if I am headed back downstream towards the big waterfall again.

According to the vast majority of Disability Rights attorneys, including those on the American Bar Association’s Disability Commission, the # 1 obstacle to equality for people with disabilities is the lack of accessible legal representation, protection and advocacy which is federally mandated. Number One. Without this legal protection, our rights under the ADA, the US Supreme Court Olmstead and Endrews decisions, the Rehabilitation Act, and the Individuals With Disabilities Education Act are constantly violated with services, accommodations, and modifications to which we are entitled repeatedly denied us.

One suggestion I would make as a step to filling part of this gap as quickly and with as little taxpayer expense as possible would be for the State Bar of Texas to ramp up a Disability Rights Pro Bono program through its already existing Legal Services Division Pro Bono Department. However, I would also recommend that many all of the programs of the Legal Services Division, including the Texas Law Help, Lawyer Referral Service, Texas Lawyers for Veterans, be studied and improved. In general, I have found the Access To Justice Programs did not meet my needs as a person with disabilities at all and most in the disability community find adequate legal services almost impossible to get.

The # 2 major problem facing Texans with disabilities is the extreme lack of public understanding and awareness of what different disabilities are, the obstacles and needs they present, our disability civil rights. This public ignorance creates prejudice, which becomes a second disability. Too many people, businesses, local and state governments, especially the State of Texas and its Governor think and contend that Disability Rights Laws do not apply to them or to our state.

This Committee and the Texas Legislature should take actions to expand disability awareness training so that it is part of the norm for all dealing with or with responsibility for the disability community, including law enforcement, the court system, government and agency employees and administrators, educators, even staff and members of the Texas Legislature, and for the public at large. I would also encourage the expansion and passage of legislation similar to HB 2335 relating to requiring evidence-based trauma training for certain attorneys, court-appointed volunteer advocates, child-care workers, and child protective services employees and to extend that training to include the traumas of those of us with disabilities, especially the entire cognitive spectrum of disabilities. Those of us with cognitive disabilities suffer and live with far more traumas than almost all people realize and we really do need Social ad Case Workers to help us navigate and coordinate support services without being further traumatized and damaged functionally by an adversarial system of social services.

One of the most important, far reaching, cost-efficient, simple, and effective steps which could be taken to broaden public awareness of disabilities is to begin replacing the wheel chair only disability signage with one including more types of disabilities. The public perception has come to overly equate disability with being in a wheel chair.  Unfortunately, signage is advertising and works its way into public perceptions so that one of the unintended negative results of the wheel chair only sign is that all to often the majority of citizens with disabilities, the blind, the deaf, and the cognitively disabled are told that we do not look disabled, which is a very damaging, even if unintentional prejudice. I would ask this Committee to research whether under federal laws, a state could use signage such as the image below to broaden awareness.

408px-Disability_symbols_svg

There is a saying among people with disabilities, “Nothing about us without us”. That includes the work of this Committee, its individual members, and the entire Texas Legislature. How many people with disabilities serve on the staff of this committee and how many are staff members of its individual members? If our community is not adequately represented in the actual workings of this Committee and the Texas Legislature, then those making laws, regulations, and exercising oversight are doing so without adequate advice, perspective, understanding, participation, or regular interaction with of the disability community. This Committee should research how disability employment in the legislature and state government could be improved. The more that people with disabilities are employed and interact with others in the work place, the more public awareness and acceptance is improved.

Other areas this Committee and the Texas Legislature could research and address is to be sure that caseloads of Texas State, Medicaid, and other social service Case Workers are small enough to provide adequate quality care. An APS worker who recently contacted me expressed the burdens of an overwhelming case load to me, and in fact not been able to follow up with me.

It is also important for this Committee to research ways to efficiently and cost effectively improve coordination of services among agencies to persons requiring multiagency services. In one way, having more individualized Social or Case Workers could help address this. Another idea is to have a Disability Services Coordinating Office, which did not run programs and services, but had the authority to coordinate them, attempt resolution with a program not serving a client adequately, refer problems to legal services on behalf of the client, and where the person’s data on file with the Disability Coordinating Office served as an application for federal, state, local, and ngo programs and services a client is eligible for. The savings of eliminating multiple intake and application administrative offices would go a long way to funding a single Disability Coordinating Office.

This Committee should also research how to fairly reduce excessive administrative demands for certification and assessments of need placed on people with disabilities, as these are not cost effective if required in excess or without alternatives. People with disabilities have already gone through extensive review and process to be officially determined to be disabled. We are under the ADA to be taken as the authority on our own unique disabilities and needs, and it becomes a form of double jeopardy if we have to constantly get a physicians letter, an assessment, or certification of needs which are commonly associated with our disabilities. Examples of this would be having to have certification for the ned of a service animal or animals, or the necessity of home internet access and basic computer equipment as a ramp to the world, or the need for help with visual or cognitive tasks. All of these are known to be essential, basic, commonly needed assistive necessities for people with disabilities, and as such should not be subject to additional layers of certification. Coordinating eligibility certifications and renewals could alleviate a lot of stress, energy, and time for persons with disabilities and administrators as well as reducing unnecessary costs.

There are some specific issues in my case I ask this Committee to review. One of them is my ADA Title II Complaint and Request for Mediation made to the Chief General Counsel of the Texas HHSC that I am being denied equal access to state programs and services as a person with cognitive and visual disabilities without the assistance of a Social or Case Worker I have long sought from the HHSC, and thus that is an equal access violation of Title II of the ADA. I contend that my ADA Modification request for a Mediation has been illegally ignored by the Chief General Counsel of the Texas HHSC. In addition, although the Chief General Counsel of the Texas HHSC promised in writing to be supportive of HHSC staff efforts to provide a Social Worker through Mental Health Programs, as such is not provided under Medicaid, the Chief General Counsel of the HHSC did exactly the opposite. Such abuse should not be tolerated from a person in an office of such responsibility. I think that this Committee should ask the Chief General Counsel of the Texas HHSC about this. An alternative dispute resolution system must be legislated to be part of the HHSC.

A significant part of the reason I have asked for a Mediation rather than pursue other HHSC grievance procedures is that these have failed me in the past and are very cumbersome to deal with. When I complained to the Ombudsman’s Office in @ 2015 that an organization providing the Client Directed Services program had taken me on as a client and then dropped me without giving cause, that complaint was kicked over to DADS and was never addressed or resolved. In 2010, I notified the HHSC Office of Civil Rights investigator who had made a determination against me in a complaint I filed, that a DARS official had given false or misleading information to the investigator by stating that a specialist (brain injury) would be provided for me and then almost immediately turning around and refusing to provide the promised service. Nothing was ever done about that. I got a lot of mistreatment by DARS.

If this committee would please ask HHSC officials specifically about their failures in my particular case, and how the HHSC proposes to remove what is essentially a blockade to the varied and vital services I need, have been approved for yet not provided, promised and not provided, and have long requested and never provided, it could save my life at this point. The neglect has become unmanageable and is creating too many collateral problems.

The HHSC must come to an umbrella resolution with me about an intermediary Social Worker as well over the diverse elements essential to my whole support services needs including the following: 1) how to address the more than 850 hours of PHC I was wrongfully left without by Superior MCO and the HHSC as well as replacing the ruined or unsanitary kitchen utensils needed as a result of that neglect of services , 2) how to provide me with the paperwork and record keeping assistance needed and long sought due to my visual and compounding cognitive disabilities, which have made that an impossible task, yet these records and paperwork are needed for the assistance programs I must utilize and other life demands, 3) how to provide me with the protective lensed eyeglasses supposedly available through Medicaid that I have not been provided, and 4) how to provide me with a brain injury, cognitive, other therapist and other professional help as promised but not provided, and the IT support needed as the computer and digital communications are my lifeline to the world. All of these are needed to assist in me in reestablishing a whole, simple, productive, and independent life in the community.

Though legislative staff have attempted to get my services restarted recently, the HHSC has only offered to address new assessments by Superior for PHC , which will not comprehensively address all my needs as a whole. As I explained in my previous statement to this committee, I can not negotiate over every single piece of my needed services, one piece at at time, that is too demanding on my ability,energy and time needed for other basic life demands. I have been characterized by HHSC officials to Legislative staff as refusing to get an assessment, when I have made it clear the PHC assessment by Superior Health the HHSC wants to pass the buck to does not and can not cover the umbrella agreement for coordinated services sought in my request for mediation nor can such an assessment address resolution of past broken promises by HHSC, which do not require an assessment to address with the HHSC. I am seeking services in a coordinated way with a PHC assessment being s step subsequent to an umbrella agreement through Mediation which the Chief General Counsel of the Texas HHSC is refusing.

I would advise this Committee that at the beginning of September, Investigators with the Texas HHSC Inspector General’s Office made an appointment with me and interviewed me regarding my case as reported by the Dallas Morning News. I also put on the record of their investigation various concerns about how the private Medicaid MCOs were likely charging for processes of no value to patients such as myself, but for which they were additionally well paid by the HHSC. I also put on the record claims that the nursing services provided by the private Medicaid MCOs fell short of the Standards of Nursing Practice of the Texas Board of Nursing. Excessive cost and poor quality is the name of their game. I have asked them for a copy of their completed report.

I expressed to them, and I believe this Committee should review, 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.

I also expressed to the investigators my overall contention that RNs are responsible for executing many of the abusive actions of MCOs because the pressures of employment too often compel RNs not to adhere first and foremost to their professional standards, but rather to the demands of their employer. My complaints to the TBN of violations of the Texas Standards of Nursing Practice by RNs at Superior were mishandled by the TBN investigator, who never worked with me to produce an accurate affidavit which I could sign. One of my complaints was that I had been left in unsafe conditions without approved services by RNs at Superior in violation of the nursing standards. Although I asked the TBN investigator to come look at the unsafe conditions in my home created by lack of PHC services I should have been receiving, the investigator did not come. However, the DMN interview with me in my home clearly shows those unsafe conditions. In addressing the failures of Medicaid Managed Care services, this committee may have overlooked the lack of oversight and enforcement by the Texas Board of Nursing which has enabled too many of the abuses by Superior and other MCOs.

I also expressed to the investigators that when I was refused the Medicaid Disability Waivers applied for through Superior Health MCO by the Texas Medicaid Healthcare Partnership in @ fall of 2015, even though my Physician had signed in the affirmative that I need either Institutionalization or to be provided with Community Care Services through Medicaid Disability Waivers, there was no opportunity or notice given on how to Appeal that decision. The US Supreme Court Olmstead Decision mandates that people with disabilities not be driven to institutionalization by refusal to provide adequate support services to live independently in the community. The Olmstead Organization claims that no State in the U.S. can claim that it is fully compliant with Olmstead yet, almost 20 years after the ruling. I assert that my Olmstead Rights are being violated by the Texas HHSC.

I asked the investigators to note, as should this Committee: “On August 22, 2016, the United States filed a Statement of Interest in the case of Ball v. Kasich. In Ball,individuals on a wait list for home- and community-based services allege that Ohio’s ongoing denial of services has placed them at serious risk of institutionalization. The Statement of Interest clarifies that non-institutionalized individuals with disabilities who are not currently receiving state-funded home-and community-based services may bring a claim that a public entity has placed them at serious risk of institutionalization or segregation in violation of Title II’s “integration mandate.” The Statement of Interest also makes clear that a serious risk of institutionalization need not be imminent to state a valid Olmstead claim.”

I also advised the investigators that the only communication I have had from Superior MCO for essentially a year or so regarding my services has been recently, following my statements to the Appropriations and Human Services Committees in April and the DMN reportage in June. Superior asked if I would sign a blanket release of my medical records should the media request them. I declined and offered to approve such requests on a case by case basis. Superior is more concerned with its own bureaucracy than addressing my needs as a patient. I have received one robo call to update information, which I find unacceptable as Superior has agreed to communicate with me by email through a single consistent Service Coordinator, not a team or robo calls, through unencrypted email, which they continually fail to do in the constant rotation of staff.

So I reamin very much in need of assistance which I have been without for far too long, and I wish that members of this committee and the legislature would give more public voice to the onerous dysfunctions of our social service programs which afflict people with disabilities more than they help us. As long as legislators remain silent, they are complicit in the problem.

Thanks for your consideration and always my best,
Jake Billingsley

 

Posted in 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, 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, Medicaid Community Care Services, Medicaid Cost Containment, Medicaid Disability Waivers, Medicaid Mangaed Care Organizations, Medicaid Service Coordination, Multiple Disabilities, Olmstead Mandate, Patients' Rights, People With Disabilities, Pivatized Medicaid Servies, Protection and Advocacy Agnecies, Protection and Advocacy Inadequate For Peoople With Disaabilities, Social Workers, Standareds of Nusing Practice, Texas Heath and Human Services Commission, 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

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

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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?

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 was passed by the U.S. House of Representatives on February 15, 2018.

Thankfully it died in the Senate and let’s hope that it does not rear it’s ugly head again.  Though many other Bills are being introduced at state and federal level which infringe on the Civil Rights of People With Disabilities.  Texas State Senator Hughes authored a Bill to prohibit taking people with disabilities to the polls to vote, it failed.  It is the trend these days, but most overlook that Disability Civil Rights violations.

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

A dozen Democrats a a herd of Republican Co-Sponsors of HR 620: https://www.congress.gov/bill/115th-congress/house-bill/620/cosponsors?fbclid

These 12 Democrats voted for this Anti-Disability Civil Rights Bill, ignoring massive pleas from the disability community:  Aguilar, Bera, Cooper,  Correa, Cuellar, Foster, Peters. Peterson, Rice (NY), Schrader, Speier, and Torres.

http://clerk.house.gov/evs/2018/roll080.xml

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.

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

Overview of Concerns with H.R. 620, the ADA Education and Reform Act of 2017

• 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.

408px-Disability_symbols_svg

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