HCBS Problems and the Pandemic

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.

 A November 16 release from the National Council on Disability:

Today the National Council on Disability releases a report examining weaknesses in the home- and community-based services (HCBS) ecosystem, taking stock of the preventable disproportionate death toll in congregate settings during the COVID-19 pandemic.

Strengthening the HCBS Ecosystem – Responding to Dangers of Congregate Settings during COVID-19 builds upon findings in NCD’s 2021 Progress Report: The Impacts of COVID-19 on People with Disabilities and 2012 report Deinstitutionalization: Unfinished Business. The report illustrates the interworking of the HCBS ecosystem, including the direct care workforce and an adequate accessible, affordable housing inventory, and how HCBS is safer, costs less, and is the preference of most individuals over institutional settings.

Currently, 820,000 people with disabilities remain on wait lists to transfer out of institutional settings. During the first year of the pandemic, 35,000 nursing home residents died of COVID-19, representing 42% of the total deaths in the U.S.

“For many people with disabilities during the pandemic, congregate settings had a devastating impact,” said NCD Chairman Andrés Gallegos. “In many instances, social distancing wasn’t achievable and the inability to transition out of such a setting became a death trap.”

NCD found that approximately 14 million Americans of all ages need HCBS, with 40% being adults under 65 years old, and people younger than 30 years old making up the fastest growing nursing home population.

“Severe shortages of direct care workers and available affordable, accessible housing are just two examples are longstanding fragilities in the HCBS ecosystem,” said the Chairman. “The neglect in addressing these matters led to the preventable deaths of scores of Americans with disabilities and will again if policymakers don’t act.”

The report offers NCD’s key recommendations to create a new paradigm – the Community Living Bias – with pointed recommendations for policymakers for Medicaid, the direct care workforce, housing policy, hospital discharge planning, COVID-19 flexibilities and waivers, and data collection.

From the report:

 Intersectional inequities are also present in an analysis of HCBS outcomes and successful interventions. A 2019 study focused on the potential of HCBS waivers to reduce disparities in unmet need among children of color with autism spectrum disorder.136 States with 1115 waivers from the Federal Government offered expanded eligibility for HCBS, which differed in the “generosity” (i.e., the amount of services offered, number of participants allowed and duration). The study found that waivers with the highest “generosity” were most effective in closing disparities between Black and White children with autism.137 The State of Washington also used 1115 waivers to expand access to HCBS services to “pre-Medicaid” individuals to divert institutionalization.138 These findings provide important implications that the presence of a waiver alone, without consideration of the inequitable baseline, may not address racial, ethnic, age, or other inequities.

• 136 LaClair, Michelle, David S. Mandell, Andrew W. Dick, Khaled Iskandarani, Bradley D. Stein, and Douglas L. Leslie. “The effect of Medicaid waivers on ameliorating racial/ethnic disparities among children with autism.” Health services research 54, no. 4 (2019): 912-919. Strengthening the HCBS Ecosystem 85 
• 137 Id.
• 138 Anthony, Stephanie, Arielle Traub, Sarah Lewis, Cindy Mann, Michelle Herman Soper, and Stephen A. Somers. “Expanding Access to HCBS for “Pre-Medicaid” Individuals to Prevent or Delay Nursing Facility Utilization: A Strategy for Strengthening Long-Term Services and Supports.”

 

NCD Urges Replacement of AbilityOne

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

From the National Council on Disability:

NCD conducted a comprehensive analysis of the AbilityOne Program to determine whether it promotes Congress’ goal of improving employment opportunities for people who are blind or have significant disabilities. Today, the program is made of a government-appointed Commission and staff, three central nonprofit agencies (CNAs) that facilitate the program, and over 500 participating nonprofit agencies that hire people who are blind or have significant disabilities to sell goods and services to federal agencies.

NCD’s report raises the following concerns about the AbilityOne Program:

• Despite increased program revenue earned through sales to the Federal Government, employment for people who are blind or have significant disabilities has steadily declined since 2011 – While overall program sales have increased, the number of employees and total direct labor hours from the employment of people who are blind or have significant disabilities have declined since FY 2011. The percentage of overall program revenue paying wages to people are blind or have with significant disabilities has also declined each year since FY 2011.

• The program undermines current national disability policy goals to create competitive integrated employment opportunities for people with disabilities – The program is a federally sanctioned segregated jobs system from 1938 that reinforces distinct employment paths for people who are blind or have significant disabilities that may result in subminimum wages. The program relies on an outdated societal landscape that existed prior to a public right to education and other core civil rights for people with disabilities. For this reason, only approximately four percent of employees hired under the program exit the program to enter competitive, integrated employment each year.

• Repeated concerns about transparency and conflicts of interest remain unaddressed and undermine confidence in the program – While the CNAs continue to seek opportunities to increase program revenue, past scrutiny and criticism from Congress, the Government Accountability Office, its own Inspector General, and the Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities remain unresolved. The CNA program fee remains exempt from federal restrictions on its use allowing it to fund executive salaries and lobbying expenses. In addition, NPAs have the discretion to decide which employees have significant disabilities, however NCD’s interviews and site visits with NPAs raised concern that they lack the capacity, skill, and knowledge to objectively evaluate the skills of their workers with disabilities.

NCD concludes the report by advising Congress to transition the outdated AbilityOne Program into a new requirement under Section 503 of the Rehabilitation Act that will incentivize federal contractors to hire a percentage of people who are blind or have significant disabilities at competitive wages and provides recommendations to successfully transition the current 45,000 AbilityOne employees into competitive, integrated employment.

From the report:

The increased  prevalence and availability of the customized employment approach allow  people who were previously considered “unemployable”to successfully maintain employment in a competitive, integrated environment. The key to this approach is the use of flexible strategies. Rather than relying on open job postings, a job developer will work to determine the specific skills, assets, and interests of a person with a significant disability and how these skills can address an unmet need of an employer. For example, Sean, who is autistic, enjoyed organizing books and dusting. He was hired by Barnes & Noble bookstore to clean and organize the shelves prior to the opening of the store each morning. He loved his job, and the store was equally pleased because their other employees did not have the time to focus on such meticulous tasks. he advent  of customized employment negates the need for people with significant disabilities to rely on AbilityOne for employment.

Report on Disability Employment

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

From the National Council on Disability:

As the nation celebrates the 30th anniversary of the Americans with Disabilities Act (“ADA”), NCD reflects on the monumental social impact of this landmark civil rights legislation since its enactment on July 26, 1990. As a result of the ADA, people with disabilities enjoy protections that have allowed them to enter the competitive workforce, like protection from discrimination based on disability and the requirement of reasonable accommodations.

In this year’s statutorily required progress report, NCD acknowledges the achievements of the ADA over the past three decades but focuses attention on the persistent barriers that must be addressed in order to ensure the economic inclusion of people with disabilities into mainstream society in the future.

While significant progress has been achieved over 30 years, NCD found labor statistics continue to show extreme disparities between labor force participation rates of people with and without disabilities.

The report focuses heavily on the following areas:

• Services for Transitioning Youth – NCD found disparities between skills training and employment-related services available to transition-age youth with and without disabilities. Students without disabilities were more likely to receive opportunities in job shadowing, internships, part-time jobs, and volunteer work, which prepare them to enter the workforce successfully. To the contrary, students with disabilities were less likely to have these opportunities, putting them further behind their peers.
• Public Benefits – NCD identified employment disincentives tied to federal programs and other benefits which perpetuate a “poverty trap,” in which people with disabilities must choose to enter the workforce and risk losing the healthcare they need to live, or maintain their healthcare but remain impoverished indefinitely, due to the asset limitations imposed by federal means-tested programs.
• Support of Entrepreneurship – Finally, the report identifies opportunities to expand employment for people with disabilities in the future by analyzing programs available under the Small Business Administration (“SBA”). With nearly ninety-seven percent of businesses being classified as “small,” NCD found that this underutilized federal agency has the potential to engage with the broadest number of businesses across the country that could benefit workers with disabilities.

NCD urges policymakers to address these barriers by concluding the report with recommendations to the President, Congress, and the Administration.

From the report:

In this war for talent, employers now routinely recruit job-ready candidates with disabilities for competitive integrated employment to enhance their bottom line, deeply enrich the skills available within companies, and promote diversity. For example, in 2012, the Federal Home Loan Mortgage Corporation (Freddie Mac) partnered with the Autistic Self Advocacy Network to create an Autism Internship Program to match
the needs of its company with the capabilities of autistic people who had college degrees
in the fields of computer science, mathematics, and finance. Likewise, companies like
JP Morgan, SAP, DXC Technology (formerly Hewlett Packard Enterprise), and Microsoft also have autism hiring programs, built on the idea that such employees have unique skills traits that are especially useful in science, technology, engineering, and mathematics (STEM) industries and that removing barriers to entry for them will allow such companies to access an untapped labor pool. In 2019, JP Morgan Chase reported that employees in its Autism at Work program were 48 percent more accurate and as much as 92 percent more productive than peers in comparable positions.

KanCare

Kaiser Health News reports on a change that it coming to Kansas in January.

That’s when Kansas’ Medicaid managed care system — called KanCare — will take charge of all home and community-based services for about 8,500 people with developmental disabilities, most of them adults. What concerns families and advocates the most is that the three for-profit national insurance companies that run KanCare will be responsible for a statewide program that they’ve never managed in Kansas or elsewhere. They’re also worried that the need to make a profit ultimately will destroy a system families and advocates think works well.

While Kansas will become the first state to make such a leap, it is being watched closely elsewhere, as at least two other states — Louisiana and New Hampshire — are considering moving in the same direction.

...

By next year, more than two dozen states are expected to have set up programs to transfer frail elderly, mentally ill or individuals with physically disabilities into managed care for home and community-based services. But in most states, those with developmental disabilities — people with impairments such as cerebral palsy, Down syndrome and autism — have been excluded from managed care for these services because their needs are so specialized.

...
“There is a great deal of fear in the community that these big private health plans don’t know much about this population,” said Maureen Fitzgerald, disability rights director for The Arc, a national advocacy organization for those with developmentally disabilities. “These are such vulnerable people. Mistakes that are just inconvenient to some can be devastating to them. If the home care person doesn’t show up, you could be lying in your bed all day. It’s kind of scary.”

Only a handful of states, including Michigan and Vermont, have moved individuals with developmental disabilities into managed care for long-term services. They’ve mostly relied on existing networks of community-based nonprofits or county agencies or have made themselves the managed care organization. None has turned exclusively to national managed care companies.

The Kansas City Star reports on a federal panel asking why Kansans with developmental disabilities no longer get services for which they previously qualified.

Members of the National Council on Disability pointedly put that question to Shawn Sullivan, director of the Kansas Department for Aging and Disability Services, and Susan Mosier, state Medicaid director. The council, appointed by the president to advise his administration and Congress on national disability policy, has held two days of hearings in Topeka this week.

It spent almost all of Thursday focused on KanCare, the state’s new managed-care program for the poor and disabled.

Working through three private-sector insurance companies, KanCare has been managing medical care since Jan. 1. Next month, it’s scheduled to take over management of daily living services for the developmentally disabled.

Disability council member Gary Blumenthal, a former Kansas legislator and social services official, continuously pressed to know how the previous government-run Medicaid system could decide that a disabled person needed 24/7 attendant care, while KanCare thinks the same person can get by with about 40 attendant hours a week.

Blumenthal also questioned whether the managed-care system is using a lower set of standards to make such quality-of-care decisions. Sullivan replied that the standards are the same.

“The difference is pre-KanCare, those weren’t always followed and post-KanCare, they are,” Sullivan said.

A Murder

A number of people with ASD have become murder victims. At Babble, Joslyn Gray writes of Alex Spourdalakis, a 14-year-old ASD boy who died at the hands of his mother and godmother.

An opinion piece by columnist Eric Zorn in the Chicago Tribune offers sympathy for the two women, saying that “the tragic circumstances here suggest desperation, sorrow, confusion and helplessness in the hearts of these women.” Dozens upon dozens of comments, while not excusing the act, agree with the advice to “feel pity rather than rage…to seek to understand even as we condemn.”

I don’t. I don’t feel pity. Just the rage. I don’t understand this as desperation, because when you’re desperate, you take the help that is offered.

Both the National Council on Disability (NCD) and the Autistic Self-Advocacy Network (ASAN) have called for the U.S. Department of Justice to investigate Alex’s murder as a hate crime under the Matthew Shepard and James Byrd Jr. Hate Crimes Prevention Act of 2009.
“To do otherwise sends the message that the short life of Alex Spourdalakis was worth less than the lives of other children and reinforces the notion that killing one’s child if they are disabled, while regrettable, is understandable,” said NCD Chairperson Jeff Rosen in astatement. “This way of thinking should not go unchallenged, and the fervor with which we investigate and prosecute the perpetrators of crimes against people with disabilities should not be diminished.”

ASAN, an advocacy group run for and by autistic people, stated:

“In truth, Alex’s murder is about a reprehensible and repulsive ideology all too common within our society that preaches that it is better to be dead than disabled. As long as our society treats the lives of disabled people as worth less than those of the general population, more disabled children and adults will be subject to acts of violence and murder. As a result, we call for the prosecution of Alex’s killers to the fullest extent of the law.”

In contrast, Autism Speaks offered the following statement:

“On Sunday, 14-year-old Alex Spourdalakis was found stabbed to death in his suburban Chicago home. Alex was severely affected with autism and his mother and his caregiver have been charged in his death.

“We are deeply saddened by the incident involving Alex Spourdalakis. Our thoughts and prayers go out to everyone involved in this extremely unfortunate situation. In light of this tragic event, we encourage individuals with autism and their families who are experiencing a crisis situation to visit beta.samhsa.gov/find-help, or call 1-800-273-TALK (8255).”

With all due respect to Autism Speaks, the premeditated, gruesome, and cold-blooded murder of a 14-year-old is more than an “extremely unfortunate situation.”

Deinstitutionalization

The National Council on Disability has a deinstitutionalization toolkit:

NCD’s Deinstitutionalization Toolkit is designed to provide all those interested in institutional closures and expanded community living opportunities for people with intellectual disabilities and developmental disabilities (ID/DD) with information, strategies, state data, and case studies that can facilitate closure and build community capacity to serve more people with ID/DD in the community.

Among other things, it explains aspects of federal law:

To date, three federal statutes govern the rights of individuals who are institutionalized: the Americans with Disabilities Act of 1990 (ADA), the Rehabilitation Act of 1973 (Rehab Act), and the Civil Rights of Institutionalized Persons Act of 1980 (CRIPA). These statutes serve as the bases of legal action for the rights of a person with an intellectual disability or developmental disability (ID/DD) and are critical to the deinstitutionalization process. As noted below, only the Department of Justice (DOJ) can bring litigation under CRIPA, although people with disabilities and their advocates may file complaints with DOJ requesting that DOJ investigate possible CRIPA, ADA, and Rehab Act violations. People with disabilities and their advocates can also file ADA and Rehab Act complaints with their regional Office for Civil Rights within the U.S. Department of Health and Human Services.

It also lays out basic steps of a strategy:

1. Develop a broad-based, well-organized coalition.
2. Explore legal remedies
3. Become experts in Medicaid, the federal Medicaid Home and Community-Based Services Waiver, and the Affordable Care Act.
4. Build your case with faces, not facts.
5. Line up leadership.
6. Analyze the political environment.
7. Seek out groups or individuals with different perspectives.
8. Use timely and targeted communication, public education, and media relations.
9. Advocate for quality assurance standards to protect health and safety of people living in community-based settings.
10. Include specific implementation steps in closure plans

Parents with Disabilities

A release from the National Council on Disability:

On Thursday, September 27, the National Council on Disability (NCD), an independent federal agency, released “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children” -- a groundbreaking policy study, infused with real life stories of parents with disabilities, to provide a comprehensive overview of factors that support and obstruct Americans with all kinds of disabilities from exercising their fundamental right to begin and maintain families.

“Twenty-two years after passage of the Americans with Disabilities Act with an increasing number of people with disabilities taking advantage of increased protections to receive an education and go to work, parents with disabilities continue to be the only distinct community that have to fight to retains – and sometimes gain – custody of their own children without cause,” said NCD Council Member, Ari Ne’eman. “Currently, the U.S. legal system is not protecting the rights of parents with disabilities and their children. Two-thirds of state child welfare laws allow courts to determine a parent is unfit solely on the basis of a parent’s disability. In fact, every state allows disability as a consideration when determining the best interest of a child in family or dependency court. Whether actions are taken at the state or federal level—as an amendment or a new law—the need to correct this unfair bias could not be more urgent or clear.”

At several points, the report specifically discusses autism:

• "Discrimination by legal authorities and in child custody proceedings against parents with emerging disabilities is common as well. For example, as improved diagnosis and expanding diagnostic criteria have enhanced identification of children and adults on the autism spectrum, discrimination against parents diagnosed as autistic has emerged as a serious and ongoing systemic problem. As our society recognizes autism and other newly identified disabilities in a greater percentage of the next generation, the percentage of the American public susceptible to discrimination will increase. Parents who belong to these groups will experience the same abuses of their civil rights that parents with psychiatric disabilities currently experience; notably, status-based removals and deprivation of due process protections such as reunification services" (p. 15 of PDF).
• The report tells the story of Lorena, an ASD woman who had to put her children in foster care -- and has been unable to get them back (pp. 107-108).
• "Another example of the use of persistent social stereotypes and prejudicial assumptions can be found in discussions regarding parents on the autism spectrum. These parents are subject to many of the same unfounded stereotypes, claiming incapability to parent or risk of violence, which parents with intellectual and psychiatric disabilities encounter. Additionally, parents on the autism spectrum are often presented as uncaring or lacking empathy toward their children or spouses.539 Despite research showing these claims to be inaccurate, they persist in guidance provided to family law professionals regarding autism and Asperger’s syndrome (a type of autism).540 For example, a 2003 article by a family law professional made the case that in high-conflict divorces in which one party has a diagnosis of Asperger’s, the fault should be presumed to lie predominantly with the autistic parent, even if evidence suggests otherwise.541 The long-term consequences of these stereotypes are significant—some parents who are on the autism spectrum have said that fear of discrimination in child custody proceedings keeps them from leaving relationships with abusive partners.542"
• 539. Melanie Yergeau, “Circle Wars: Reshaping the Typical Autism Essay,” Disability Studies Quarterly 30(1) (2010), http://dsq-sds.org/article/view/1063/1222. 
• 540. Kimberly Rogers et al., “Who Cares? Revisiting Empathy in Asperger Syndrome,” Journal of Autism and Developmental Disabilities 37 (2007): 709–715, http://www.cog.psy.ruhr-uni-bochum.de/papers/2007/Rogers %282007 %29_JAutismDevDisord.pdf; Sheila Jennings Linehan and Jan Schloss, “Who’s Minding the Children? Child Contact and the Neurologically Impaired Parent,” Journal of International Family Law 4 (2003): 205–209, http://www.familymattersassociates.ca/ images/WhosMindingtheChildrenInternationalFamilyLaw.pdf.
• 541. Id.; Sheila K. Jennings, “High Conflict and Asperger’s Syndrome,” Mediate.com (2003), http://web.archive.org/web/20100111025800/ http://www.mediate.com/articles/linehan_s1.cfm#bio.
• 542. Autism Self Advocacy Network, “Cassandra’s Impact on Autistic Victims of Domestic Violence” (2009), http://autisticadvocacy.org/2009/05/cassandras-impact-on-autistic-victims-of-domestic-violence.

Ne'eman Confirmed

An earlier post discussed Ari Ne'eman's nomination to the National Council on Disability.

Disability Scoop reports:

After months of delay, the Senate unanimously confirmed Ari Ne’eman on Tuesday to become the first person with autism to serve on the National Council on Disability.

In December President Barack Obama nominated eight new members to the National Council on Disability, which makes recommendations to the president and Congress on disability issues. Early this year, all of the nominations were confirmed except that of Ne’eman, who has autism and is the founder of the Autistic Self-Advocacy Network.

The reason: one or more members of the Senate placed an anonymous hold on the nomination, preventing the full Senate from considering it.

Article on Ne'eman Nomination

The Kansas City Star offers a balanced article on Ari Ne'eman's nomination to the National Council on Disability, but it starts with an blatantly false statement: "Of the eight people President Barack Obama nominated to the National Council on Disability, only one personally has lived with a disability."

Nope, that's not even close to being accurate. A statement from the White House explains:

• Jonathan Young "is partially paralyzed from a spinal cord injury."
• Carol Reynolds "has struggled with and overcome several mental health and substance abuse issues and has been in recovery for 26 years."
• Fernando Torres-Gil "is a polio survivor."
• Chester Alonzo Finn "is blind and is developmentally disabled and is committed to fighting for the civil rights of people with disabilities."
• Sara Gelser has a son with "FG Syndrome, a rare developmental disability."
• Dongwoo Pak's " left arm was paralyzed by the disease polio."

Ne'eman Nomination

Ari Ne'eman's nomination to the National Council on Disability has stalled because of an anonymous hold in the Senate. The New York Times reports:

When President Obama nominated Ari Ne’eman to the National Council on Disability, many families touched by autism took it as a positive sign. Mr. Ne’eman would be the first person with the disorder to serve on the council.

Ari Ne'eman would be the first person with autism on the National Council on Disability.

But he has since become the focus of criticism from other advocates who disagree with his view that society ought to concentrate on accepting autistic people, not curing them.

A hold has been placed on Mr. Ne’eman’s nomination, which requires Senate confirmation. Whether the hold is related to the criticism of Mr. Ne’eman (pronounced NAY-men) and what it might take to lift it is unclear.

Ari Ne'eman

The Newark Star-Ledger reports on Ari Ne'eman:

Today, after a swift and sometimes bumpy ascent in the realm of national autism politics, he is the first person with autism to be nominated for a seat on the National Council on Disability. If confirmed by the U.S. Senate, he also will be the youngest person to serve on the board in at least 20 years, council spokesman Mark Quigley said.

Ne'eman, who has Aspegger Syndrome, is a spokesperson for the neurodiversity movement.

He’s tossed verbal firebombs at Autism Speaks, one of the nation’s best-funded autism groups, accusing the organization of insulting people with autism by directing most of the money it raises to researching autism’s cause rather than helping those who already have the condition.  The exclusive focus on a cure, Ne’eman contends, amounts to medically engineering people like him out of existence. "We should be spending at least as much money on improving our quality of life instead of trying to get rid of us," he said. He occasionally complements his comments with guerilla tactics. Last month, he organized a protest outside of Carnegie Hall in New York City, where an Autism Speaks fundraiser was being held, he said. Ne’eman knows he’s a lightning rod, saying he’s received death threats. After one threat last summer, he said, he had to be escorted by police to speak at an event in New Hampshire.