April 12, 2024

VOR's Weekly News Update

VOR is a national non-profit organization

run by families of people with I/DD and autism

for families of people with I/DD and autism.

VOR's 2024 Legislative Initiative

MAY 7 - 9, 2024

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As we leave behind the capricious days of March for the hope of True Spring in April, members of the autism community prepare to commemorate Autism Awareness/​Acceptance Month. Like many “awareness” months, April has been officially recognized by state and national leaders as a time to acknowledge a disorder and a population that has historically been misunderstood, mistreated, and misrepresented.

Unfortunately, there is a movement afoot within the autism community that might abolish the need for an Autism Awareness/​Acceptance month altogether. The growing population of neurodiversity advocates seem to be mainly autistic self-advocates with low support needs, plus scores of self identified autistics, many of whom get their diagnostic authority from Tik-Tok videos or “You might be autistic if” quizzes online.

If they continue to tell the world that autism is not a disorder, the official keepers of the World Awareness Calendar can reassign the month of April to another cause.

The shift in narrative

For those with profound autism, a group the U.S. Centers for Disease Control estimates at approximately 27% of the entire autism population, this shift in the narrative from autism-as-a-disorder to autism-as-just-another-way-of-being has done considerable harm.

Their needs must be elevated rather than dismissed. Without awareness of the struggles profoundly autistic individuals and their caregivers face, there will continue to be a lack of public policy, research, and support services to adequately address their significant needs.

The notion that autism is not a disorder, and therefore no treatment or cure is needed, lies at the center of the neurodiversity argument. It is an argument which, by the way, is often articulated by well-spoken autistic self-advocates who are living successfully in the community.

Not only is this giving the general public a skewed view of the clinical presentation of autism, but it is influencing government policy at all levels. The Interagency Autism Coordinating Committee, a cross-agency committee that advises the U.S. Secretary of Health and Human Services on matters related to autism, for example, has jumped on the neurodiversity bandwagon.

The IACC has begun sanitizing the language they use in their communications, softening the clinical descriptors that have been the defining characteristics of autism for decades to make them more agreeable to neurodiversity advocates. Descriptors like “self-injurious behavior,” “co-morbidities,” and even seemingly benign phrases such as “at risk” and “prevention and treatment” are being scrubbed from documents and dialog.

Even the very diagnostic labels used to differentiate the levels of severity of autism spectrum disorders are being called into question by some neurodiversity advocates.

Esteemed organizations like the Lancet Commission, which utilized the diagnostic label “profound autism” in a 2022 report, have been called out by the neurodiversity language police who claim that there is no such thing as profound or severe autism. The American Psychiatric Association’s use of levels 1, 2, and 3 in the latest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) to delineate symptom severity and support levels within the autism spectrum has been rejected by some advocates as unnecessary and discriminatory.

I beg to differ

As a parent of a profoundly autistic young adult son, I beg to differ.

No other descriptor besides “profound” is sufficient to describe the things my son struggles with on a regular basis: self-injurious behavior that is so pervasive he wears a protective helmet 24x7 to prevent brain trauma and facial fractures; spikes in aggression that can come out of nowhere, causing property damage and injury to those in his path; anxiety that can trigger incidents of elopement from the home or, worse, a moving vehicle; and communication difficulties that prevent him from telling anyone when he hurts, what he fears, or who may have harmed him (an occurrence that is far too common amongst individuals with profound autism).

Continued

Biden Pushes Plan To Improve Services For People With Disabilities

By Michelle Diament, Disability Scoop, April 12, 2024

As the Biden administration prepares to issue new rules aimed at bolstering supports for those with disabilities, the president says that much more work is needed.

In a speech this week, the president said that he’s committed to improving the nation’s caregiving infrastructure.

Biden said his administration will issue rules in the coming weeks to strengthen staffing standards in nursing homes and ensure that a larger share of Medicaid payments go to home care workers.

“But that’s not going to be enough,” Biden said. “I want to do more, and we can do more.”

Biden cited the waiting list for Medicaid home and community-based services, which includes some 700,000 seniors and people with disabilities, rising costs for long-term care and the challenges facing workers who support people with disabilities.

The president said his budget proposal for next year would raise taxes for billionaires to tackle these issues head on.

“We’re going to expand Medicaid home care services and reduce that 700,000-person backlog,” Biden told family caregivers, care workers and other advocates gathered in Washington. “That’ll mean more folks can live and work in their own communities with dignity and independence. More home care workers will start getting a better pay and benefits and dignity they deserve.”

Continued

Read a related article form McKnight's Long-term Care News here

South Carolina - Local Resident Struggles to Find Care for Sister Diagnosed with Developmental Disability

By Deric Rush, WISTV-10, April 5, 2024

April is Autism Awareness Month. One woman is bringing attention to some of the hardships she’s faced for several months searching for treatment options for her sister, who suffers from dual developmental diagnoses.

Andrea Killman says her sister Megan has had autism all her life and described her as relatively high-functioning until recently.

Not long after that, her sister was also diagnosed with schizophrenia.

She says since then, she’s been trying to put the puzzle pieces together to find her care. Killman has been struggling to find long-term treatment facilities for Megan’s schizophrenia, saying facilities claim it’s because of her sister’s dual diagnosis of autism.

“I’m living right now hour by hour. The hospital could say at any moment come pick her up. Come take her home,” said Killman.

Killman says she applied for help from the State Department of Disabilities and Special Needs. According to Killman, Megan was actually approved for a home care resource but tells us the healthcare provider only offered home care for 8 hours a week.

Megan was approved for group home care through optional state supplementation but Killman says that there are no facilities designated for people with autism.

Case managers with the South Carolina Autism Society say because of dual diagnosis, health facilities typically have extra reservations for patients.

“I’m thinking back on a client I had before where they do have a dual diagnosis,” said SC Autism Society case manager Mary Dean. “Because they had autism they wouldn’t assist them. They are saying they have to get the autism under control, or don’t mention the word autism and they would assist them without it.”

Despite the challenges, Killman says she is not giving up her search.

“And at the end of the day, it’s just me and my sister. We’ve got nobody else besides my daughter,” she said. “Nobody’s been through what I’m going through as far as I know locally. And that’s one of my main goals too... to be able to help other people later on. Because nobody’s navigated.”

Continued

House Bill 793 would require adults with disabilities to receive minimum wage for their work at the 14-c workshops. Sheltered workshops typically hire only people with disabilities to conduct piece work, or a single assembly task, while hiring non-disabled employees to supervise and assist workers with disabilities. Lawmakers opposing the legislation say the reality is the federal law allows 14-c because the alternative is having disabled adults sit in front of a TV as companies will hire a college student at minimum wage because their productivity is much higher.

Click here to read the full article and hear comments from Rep. Meier and two of the students

Dental Treatment for Patients with Special Needs and Complex Conditions: Addressing the Need and Provider Shortage

University of Rochester Medical Center, April 5, 2024

For the many people in New York state living with a developmental disability or a chronic health condition, accessing dental care can be a huge struggle. Many dentists lack the training and facilities to treat these patients effectively.

Since 2021, there have been three Upstate New York oral health safety net provider closures resulting in a dramatic decrease in services for patients with intellectual and developmental disabilities and medically complex conditions. This means fewer resources for patients and fewer dental residents training across New York.

In the late 1970s, Eastman Institute for Oral Health alum Dr. Jorge Davila developed several innovative techniques for managing patients with developmental disabilities that are still used today. These include desensitization, acclimation, gradual exposure therapy, lotion for touch therapy, aroma therapy, music and low light for relaxation.

More recently, EIOH formed a taskforce of experts in 2012 with the Golisano Foundation to identify gaps and barriers that explain why dental care is the number one unmet healthcare need. One of the main recommendations was to increase the number of providers and their skills when treating patients with special needs. 

“Not every dentist can accommodate or are comfortable treating high-risk patients. Most don’t have the special training and equipment or know how to handle medical emergencies if they arise,” said Dr. Nadejda Stephens, the Specialty Care Clinic’s associate director. “We see patients from throughout the region who have very challenging medical conditions. It’s an honor and privilege to help people when other dentists aren’t able to help them.”

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.7267 - Disability Community Act of 2023 To amend title XIX of the Social Security Act to provide a temporary higher Federal medical assistance percentage for Federal expenditures under the Medicaid program that are associated with the cost of compliance with certain Federal regulations with respect to services furnished in certain intermediate care facilities or home and community-based services furnished to individuals with intellectual and developmental 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.

S.7302 - The Credit for Caregiving Act of 2024 Sen. Michael Bennett (D-CO) This bill would amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers. In the case of an eligible caregiver, there shall be allowed as a credit against the tax imposed by this chapter for the taxable year an amount equal to 30 percent of the qualified expenses paid by the taxpayer during the taxable year to the extent that such expenses exceed $2,000. The tax credit is not to exceed $5,000 per year.

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.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.

S.1193 / H.R.2708 - The Latonya Reeves Freedom Act of 2023

Sen. Michael Bennett (D-CO) / Rep. Steve Cohen (D-TN) Allegedly written and strongly supported by ADAPt and other self-advocacy groups, this is a watered-down version of the Disability Integration Act. It is strongly biased against care in larger congregate facilities, and falls just short of seeking the elimination of ICFs.

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.

S.3118 - The HCBS Relief Act of 2023

Sen. Boby Casey (D-PA) A bill to provide for an emergency increase in Federal funding to State Medicaid programs for expenditures on home and community-based service. This bill, like others above, only provides funding for people receiving Long-Term Services and Supports through HCBS, denying any support for people in nursing homes or ICFs.

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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