June 30, 2023

Happy 4th of July!

Singer modeled her new term after the word “biodiversity,” which offered a compelling analogy: “Why not propose that just as biodiversity is essential to ecosystem stability, so neurodiversity may be essential for cultural stability?” she wrote.

Singer’s proposal collided with the nascent Autism Self-Advocacy Movement – which had launched five years earlier when Jim Sinclair famously scolded parents not to “mourn” for their autistic kids – to create a cultural phenomenon that today informs every aspect of disability philosophy, policy, and practice.

The problem? Neurodiversity has morphed into what Singer calls a “Pollyanna/Pangloss” ideology that bears little resemblance to the movement she launched more than a quarter-century ago. Afraid to say anything for years because of the aggressive trolling critics typically receive on social media, Singer finally decided that she needs to speak out. “I could put it [neurodiversity] out there, but I couldn’t control it,” she told me in a recent interview.

“I was very clear in my thesis that I was only talking about Asperger’s,” Singer told me. And in fact she couldn’t have been more explicit: In an early section entitled “Notes on language,” she wrote, “I want to make it clear that when I used the term ‘autistic,’ I am referring only to people with what is called High-Functioning Autism (HFA) or Asperger’s Syndrome (AS), that is, people who have normal to high ‘intelligence.’” Singer made this distinction because it was obvious to her that the challenges faced by the “brainy but socially inept nerds” at the center of her thesis were both qualitatively and quantitatively different from the profound impairments that characterized classic autism. “What is now called autism isn’t a unitary condition, and I only know Asperger’s – I can’t speak for severe autism.”

But if you look on social media, you will find that most neurodiversity advocates reject nearly every part of this claim – that autism isn’t a unitary condition, that lives at the two ends of the spectrum are vastly different, that those who are mildly affected shouldn’t speak for the severely impacted. In 2017, John Marble, founder of the San Francisco-based advocacy organization Pivot Diversity, tweeted “There Is No Such Thing as Severe Autism,” a claim that was amplified on other platforms such as Reddit and Instagram. More recently, neurodiversity activists have targeted researchers and clinicians in language guides frankly prohibiting the use of “ableist” and “harmful” descriptors such as “severe” and “high functioning” altogether. And over 20 neurodiversity organizations signed an open letter to the Lancet Commission objecting to its introduction of the term “profound autism” to describe autistics who also have minimal language, IQs below 50, and who require round-the-clock supervision – a carve-out that, if adopted by the American Psychiatric Association, would reverse DSM-5’s lumping of Asperger’s, Pervasive Developmental Disorder, Not Otherwise Specified (PDD-NOS) and other variants into the singular Autism Spectrum Disorder. Such activism, according to its champions, “specifically includes and advocates for those who are unable to do so themselves.”

Read the full article here

Biden Administration Plans Crackdown On Disability Rights Violations

By Michelle Diament, Disability Scoop, June 26, 2023

Federal officials are beefing up enforcement of a key U.S. Supreme Court decision that affirmed the rights of people with disabilities to be supported in the community whenever possible.

The Office for Civil Rights at the U.S. Department of Health and Human Services said it is launching a new national initiative to “help drive compliance with the integration mandate and protect the rights of people with disabilities.”

In 1999, the Supreme Court ruled that people with disabilities have the right under Title II of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act to receive services in the most integrated setting that’s appropriate to their needs.

The decision in the case known as Olmstead v. L.C. accelerated a shift away from institutions in favor of serving people with disabilities in community-based settings. However, more than two decades later, hundreds of thousands of individuals nationwide remain on waiting lists to access services in the community.

The new initiative, announced this month to coincide with the 24th anniversary of the Olmstead decision, will reinvigorate enforcement and compliance efforts at the Office for Civil Rights by addressing complaints received by the office and other barriers to community living, officials said.

In addition, the civil rights office plans to ensure that state and local entities as well as those receiving funding from HHS understand their obligations under the ADA. And, there will be technical assistance and other outreach to educate providers on their responsibilities and make sure that stakeholders know their rights.

In a posting about the new effort, Melanie Fontes Rainer, director of the Office for Civil Rights, encouraged people to speak up about problems accessing community living.

Read the full article here

If you haven't read Carole Sherman's response to the Senate Special Committee on Aging's Olmstead Panel yet , this might be a good moment to do so...

For Teens With Autism, Transition Goals Often Lacking

By Shaun Heasley, Disability Scoop, June 27, 2023

The vast majority of teens with autism have transition plans as part of their individualized education programs, but a new Centers for Disease Control and Prevention study finds that these plans often miss one crucial element.

In a review of health and education records for 322 teens with autism in three states, CDC researchers found that 92% had a transition plan in their IEP by age 16. Nearly all included goals related to employment and education or training after high school as required under federal special education law.

However, only 41% of teens with autism had a goal related to post-high school living arrangements, according to findings published this month in the journal Pediatrics.

Notably, the likelihood that IEPs included this type of goal varied considerably by state, the study found.

Students with autism and intellectual disability were more likely to have a living arrangement goal than those with autism alone, the research showed, while teens without intellectual disability more frequently had goals to pursue higher education or competitive employment.

Meanwhile, the findings indicated that teens with autism more commonly received services including speech, occupational and physical therapy as well as adaptive physical education if they had co-occurring intellectual disability.

Read the full article here

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Delaware - Subminimum Wage Program Will Be Phased Out by End of January 2024

Delaware Public Media, June 25, 2023    

The 14(c) program in Delaware is coming to an end by early next year.

The phase-out aims to give people with disabilities fair and equal employment opportunities.

Subminimum wage was added to the Fair Labor Standards Act in 1986, allowing individuals with disabilities to earn less than the federal or state minimum wage. It was intended to provide an expanded range of employment options, but state lawmakers say the program only holds people down.

The General Assembly passed House Bill 122 in June 2021. State Rep. Debra Heffernan’s bill mandated a phased elimination of subminimum wage employment by January 2024.

Heffernan says lawmakers passed a phased approach to provide more time for planning and creating equal opportunities for people with disabilities.

Read the full article here

The state’s Employment First Oversight Commission will hold a series of public forums for families to review and comment on Delaware’s phase-out plan starting Tuesday, July 11.

https://publicmeetings.delaware.gov/#/meeting/74281

“Across the state, we are seeing that there is insufficient staff to meet needs or no staff at all,” said Richard S. Edley, PhD, Rehabilitation & Community Providers Association president and CEO. “DSPs are overworked and depleted and have compromised their own health to serve individuals with ID/A. Program closures have eliminated essential services and also affected the health of individuals served. Underfunding a system where individuals and families are already waiting for or losing needed services simply compounds a dire situation. We need to come together to help those in need.”

Click here to read the article and see pictures of the event (Including a few VOR members!)

Related article for further reading:

Intellectual Disability and Autism Care Providers Issue Dire Warning to PA Lawmakers

By Brendan Scanland, Erie News Now, June 28, 2023

Today, advocates and individuals living with intellectual disabilities and autism (ID/A) were at the state Capitol to raise funding concerns. They’re worried the 2023-24 state budget will fall short in addressing their needs.  

Care providers and advocates say things are going from bad to worse, with necessary rate adjustments and even modest funding increases for ID/A services, now on the line just days before the budget deadline.

“We need the General Assembly and the governor to do the right thing. Do not forget us,” said Sherri Landis, Executive Director at the ARC of Pennsylvania. “These are the Commonwealth's most vulnerable citizens, and they should not be forgotten,” she added. 

Landis says anticipated funding gains for ID/A services have dropped in the draft budget passed by the House earlier this month, House Bill 611, which is expected to serve as the legislative vehicle for the 2023-24 fiscal budget.

“In House Bill 611, our budget was decreased by $170 million for the community living waiver line item. It is our lifeline,” said Landis. 

Landis says the community living line item of the budget provides all the money for waiver services for individuals with intellectual and developmental disabilities. Without it, Landis says the system will continue to collapse. 

“The dollars are directly linked to people not receiving services,” said Landis.  

Providers say roughly 60,000 Pennsylvanians are at risk if they do not receive adequate funding because there are simply not enough direct support professionals (DSPs) to care for them. Currently, over 12,000 remain on the waiting list for services, including 5,400 with emergency needs. Many of those waiting have already been granted waivers, but still wait for care. 

Read the full article here

Please note: Sherri Landis was a vocal proponent for the recent closing of two of Pennsylvania's State Operated ICFs, Polk Center and White Haven, and forcing people into these understaffed community settings and taking away jobs from long-serving DSPs.

Pennsylvania - Autism Services Provider To Close At Least 23 Offices

By Abraham Gutman, The Philadelphia Inquirer via Disability Scoop, June 30, 2023

Invo Healthcare, a child behavioral health services provider headquartered in Doylestown, told Pennsylvania regulators this month that it will lay off 94 workers as it closes its Delco subsidiary, ABA2Day Behavior Services.

Invo operates in 27 states and owns multiple subsidiaries that provide services in schools and therapy centers for children with intellectual disabilities, autism and other behavioral health needs.

In 2019, Invo acquired ABA2Day, which specializes in a therapeutic approach known as applied behavioral analysis. In this commonly used technique, therapists and children with autism work together one-on-one to develop language and motor skills, and achieve other goals through positive reinforcement.

In addition to ABA2Day, Invo is shutting down subsidiaries throughout the country. It expects to close at least 23 offices and lay off nearly 1,000 employees nationally, Behavioral Health Business, an industry publication, reported.

The layoffs in Pennsylvania will take place through mid-September.

Invo did not disclose to The Inquirer how many Pennsylvania children were affected by the closure of ABA2Day. The company said it is working to transition many patients to other provider.

Read the full article here

[Please click on blue link to view information about the bill]

VOR SUPPORTS:

S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.

S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.

VOR OPPOSES:

S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.

S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.

VOR HAS SIGNIFICANT CONCERNS WITH:

S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.

VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.



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