October 4, 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.

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Note: The following opinion piece was written to the Arkansas Democrat-Gazette, which had reprinted articles that first appeared in the Washington Post opposing 14(c) programs. The Post did not print any submissions opposing their views, but the Arkansas paper did. Here is that Op-Ed.

My son is 21 and resides at the Booneville Human Development Center. Noah requires constant one-on-one supervision and a team to meet his needs and keep him and those around him safe. Despite his severe intellectual and mental health disabilities, the 14(c) program has given him something he would never have had the opportunity to have: a job.

In fact, 100 percent of the residents at the Booneville Center participate in the wage program and have jobs. If you ask Noah what his favorite thing is, he will say it's his job. He does not have any concept of minimum wage; all he knows is that he has some change in his pocket that he can use at the vending machine. He can feel productive, accomplished, and proud, often bragging about his work. The 14(c) wage program is not just a job for Noah; it provides him with dignity and purpose.

These facility-based work programs are available not only for individuals receiving residential treatment services at our state's five human development centers, but also for Arkansans living with significant and often multiple disabilities who receive services through home and community waiver programs.

These programs are often referred to as "workshops." Families with loved ones who participate in 14(c) programs know that the wage is irrelevant; they are opportunities where our family members have peers, a work family and friends, and where they are comfortable. The programs are lifelines for the disabled community, supplying them with a strong sense of belonging, comfort, purpose, and dignity via a community that uplifts them, fostering a sense of connection and understanding that is invaluable to their well-being.

"Sheltered Workshop" once meant a safe work space for individuals vulnerable to harassment, exploitation, or abuse. It fostered personal growth and success. However, over time, it has been misunderstood to imply a segregated and restrictive environment, which is viewed as inherently abusive.

Critics argue that the certificate program sanctioning these workplaces is outdated and has not adapted from its original intent. These claims are unfounded and do not reflect what families with firsthand knowledge about 14(c) programs and the individuals the programs serve know to be true.

The U.S. Department of Labor began providing opportunities through Section 14(c) in 1938. It allowed employers to hire intellectually and developmentally disabled individuals at wages below the federal minimum and set up "workshops" to provide support for the workers. The current argument against the 14(c) program is primarily based on the assertion that paying workers with intellectual and developmental disabilities a sub-minimum wage is discriminatory. Some supporters of eliminating 14(c) may be well-intentioned, but they are not well-informed about the population this program supports.

The 14(c) program has undergone changes and continues to change the services provided, the populations it serves, and how it works to remove barriers to competitive employment. Fortunately, for most individuals with physical disabilities and many on the intellectual and developmental disabilities spectrum, there are clear, attainable pathways to more traditional employment models. We applaud these successes and the legislative and philosophical shifts that have dismantled numerous obstacles.

Yet disability is diverse; there is no singular universal access route nor set of universal barriers to overcome. Everyone's challenges are unique. Currently, 14(c) programs serve the most vulnerable within the disability community: those for whom a large-scale pathway to the general workforce is not possible.

Continued on the Arkansas Democrat-Gazette

For those who don't have a subscription to the paper, Katrina's article is available on VOR's website, at www.vor.net

Senate Punts On Autism Act

By Michelle Diament, Disability Scoop, October 2, 2024

Lawmakers approved a short-term extension of the nation’s primary autism law, but the path to renewing the measure, which includes nearly $2 billion for the developmental disability, could be rockier than expected.

Disability advocates have been pushing Congress for months to renew the law known as the Autism Collaboration, Accountability, Research, Education and Support, or Autism CARES, Act before it expired at the end of September. The U.S. House of Representatives voted to re-up the measure, but the Senate failed to act.

Rather than let the law sunset, however, Congress included an extension of the Autism CARES Act in a broad short-term spending bill signed into law last week to avert a government shutdown. The measure will maintain funding for federal programs — including those authorized by the Autism CARES Act — through Dec. 20.

Now, it’s expected that further consideration of the autism law will wait until Congress reconvenes after the November election and it’s unclear how things will play out at that point.

Disability advocates say that Sen. Rand Paul, R-Ky., and possibly one other senator have placed a hold on the autism bill. A hold offers lawmakers the opportunity to prevent a vote while they discuss their issues with a particular piece of legislation.

It’s not known what concerns prompted the Senate hold and representatives for Paul did not respond to questions about the matter.

Continued

Autism research set to get federal boost

By Benjamin J. Hulac, Washington Correspondent, NJ Spotlight News, October 11, 2024

Rates of autism in New Jersey are higher than just about any other state in the country.

During his tenure in Congress, Rep. Chris Smith (R-4th), has carved out a focus on autism spectrum disorder, the formal name of the condition, which affects how people communicate, learn and interact with others.

He is the author of four significant laws on autism. He may soon add another to the list if active legislation(H.R. 7213) to reauthorize federal research on autism, becomes law.

Overall, the measure, which cleared the House last month by a vote of 402-13, is an update to federal autism legislation Congress has passed and updated for decades, starting in 2006.

To become law, the bill must clear the Senate and be signed by President Joe Biden before a new Congress is sworn in Jan. 3, 2025.

What’s in the bill

Beyond authorizing $1.95 billion to be spent on autism research, the bill directs the National Institutes of Health to expand its research on autism and increase a type of research center it operates from five to a minimum of seven.

It also requires a federal study on the “full range of needs” of autistic people, including the challenges children with autism face as they become adults and the mental health of those with autism “across their lifespan.”

“No matter what age you are, if you have autism, we want to help and provide the necessary resources,” said Smith, the bill’s lead sponsor.

Smith’s bill does not include new funding but rather approves how much can be spent across U.S. agencies, including the NIH, the Centers for Disease Control and Prevention and the Health Resources and Services Administration, part of the Department of Health and Human Services.

Floor time for legislation is limited, and it’s no guarantee that bills will become law even if they have strong backing from Democrats and Republicans.

Read the full article here

New Federal Rules Expand Access to Mental Health Services for People with Intellectual and Developmental Disabilities

By Daniel Mutter, EIN Presswire via Fox News, October 7, 2024

Federal agencies recently issued new rules to provide insured Americans with more equitable access to mental health benefits. The rules will include several improvements to existing federal law, expanding access to mental health services for Americans with autism and intellectual and developmental disabilities (IDD) who increasingly suffer from instances of poor mental health.

The U.S. Departments of the Treasury, Labor, and Health and Human Services issued final rules to revise the Paul Wellstone and Peter Domenici Mental Health Parity and Addiction Equity Act (MHPAEA). Initially passed in 2008, the federal law was intended to prohibit health insurance providers from placing greater restrictions on mental health and substance use disorder benefits as compared to medical and surgical benefits. Despite the protections under this law, Americans continue to face significant restrictions in securing mental health benefits.

The final rules will now require insurers to define conditions recorded under diagnostic categories in the mental, behavioral, and neurodevelopmental chapter of the International Classification of Diseases and the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders as eligible for mental health benefits. The new rules will provide greater federal protections for people with autism and IDD who suffer from mental health conditions such as depression, anxiety, and others.

The Link Center reports an estimated 30-70% of people with IDD also suffer from a mental health condition. Despite an increasingly high prevalence of mental health instability, there continues to be a chronic lack of a whole-person approach supporting individuals with co-occurring IDD and mental health service needs.

“People with disabilities may experience mental health conditions at rates higher than the general population and are often left without support or receiving services and supports that are available but not tailored to what they need,” says Mary P. Sowers, Executive Director of the National Association of State Directors of Developmental Disabilities Services (NASDDDS).

In addition to her role at NASDDDS, Sowers also works with the Link Center, an organization that bridges IDD and mental health systems by supporting state agencies with policy development, service design, and service coordination. “Our systems of support must work across the siloes to ensure that people have access to the clinical and home and community-based services that will enable them to thrive in their communities.”

While laws that protect healthcare access continue to improve, people with IDD still face difficult barriers in accessing appropriate mental health services including:

• Long-held misconceptions that people with disabilities don’t have the mental capacity to suffer from mental health issues

• Difficulty associated with treating mental health instability in people who don’t communicate verbally

• Misdiagnoses resulting in overprescribing of inappropriate medications, often leading to additional mental and physical health issues

• Physicians lacking the education to properly assess, diagnose, and treat mental health issues for people with autism and IDD

Continued

$12.7M Grant to Establish New Center to Investigate Genetic Basis of Autism and Schizophrenia

By Sara Bock, University of San Diego, October 10, 2024

Funded by a California Institute for Regenerative Medicine grant, researchers in the UC San Diego Verge Center aim to uncover the genetic mechanisms behind neuropsychiatric disorders

Neuropsychiatric disorders—including schizophrenia and autism—are complex conditions that have been linked to many genes involved in early brain development. However, the neurobiological mechanisms through which these genes influence brain function and mental health remain poorly understood.

To address this, an interdisciplinary team of scientists and clinicians led by Jonathan Sebat, a professor in the Departments of Psychiatry and Cellular & Molecular Medicine at UC San Diego School of Medicine, has received a $12.7 million grant from the California Institute for Regenerative Medicine (CIRM). With this funding, they will establish the UC San Diego Verge Center: Convergence and Divergence of Genes on Neurodevelopment and Mental Health, one of five new centers supported through CIRM’s pilot ReMIND (Research Using Multidisciplinary, Innovative Approaches in Neuro Diseases) program.

The new UC San Diego Verge Center will take a data-driven approach to defining the mechanisms underlying psychiatric traits. Researchers will use cutting-edge stem cell and brain organoid technologies to investigate how specific genetic mutations influence brain development.

This approach represents a departure from traditional studies that focus on one gene at a time: with laboratory studies comparing a mutant form of the gene to its typical form and clinical studies comparing people that have a gene mutation to people that are “neurotypical.”

“These previous studies have been fascinating and complex,” says Sebat. “Genes associated with autism have been found to have a wide range of effects on brain development and on cognitive function, but when we compare one autism gene to the next, it's difficult to distinguish what are the common pathways and neurodevelopmental mechanisms."

Continued

Maine - After 304 days in the ER, Bingham girl finally gets a home

By Joe Lawlor, Protlance Press Herald, October 6, 2024

Wearing powder blue Stitch pajamas, Abby Bedard smiled broadly and thrust her arm out to point at dozens of family, friends and staff at Redington-Fairview General Hospital.

Her supporters clapped and hooted as the 13-year-old rolled her wheelchair out of the hospital’s emergency department and to a van that would take her to her new home, and a new beginning.

The happy scene was long overdue.

Abby had been stuck at the Skowhegan hospital’s ER for 304 days.

She resided for months in a small, sterile hospital exam room not designed for patients with Abby’s long-term mental, developmental and physical needs.

Abby was kept nearly a year away from school, separated from the community. She spent holidays in the emergency department, and didn’t get to hang out with friends, eat dinners at home with her family or do any of the typical activities other teens enjoy. Her parents – Sue and Mike Bedard – visited often, and the hospital’s staff did what they could. But it didn’t change the fact that Abby was living in the ER because there was nowhere else she could go to get the care she needs and is entitled to under federal law.

Young patients like Abby who languish for months in hospital emergency departments are part of the reason that the U.S. Department of Justice filed a federal lawsuit against the state in September, saying Maine is violating the Americans with Disabilities Act by failing to provide adequate services to disabled children in the Medicaid program. DOJ and state officials are discussing what happens next, but it could result in a settlement or court takeover of what the federal government says are insufficient services for some of the state’s most vulnerable children.

It’s outrageous that it took so long for Abby to be placed into her new home at Treats Falls House in Orono, said Nancy Cronin, executive director of Maine’s Developmental Disabilities Council.

Cronin advocated for Abby and her family and said their struggle is an example of how the state is failing many disabled children and their families. She is recommending a suite of comprehensive reforms for the Maine Department of Health and Human Services – changes that also could help the state settle the federal lawsuit.

Continued

Few foster homes will take kids with behavioral challenges. Ohio may have a solution

By Erin Gottsacker, NPR - Hosted by Ari Shapiro, via Yellowstone Public Radio, October 10, 2024

ERIN GOTTSACKER: Samantha Stewart has always wanted a big family. So over the past few years, the door to her home has been rotating. She and her husband have fostered seven kids. One of them, a 5-year-old, faces challenges a lot of kids her age don't.

SAMANTHA STEWART: Our daughter with autism - she had gotten kicked out of a couple of different day cares because of her behaviors that stem from her autism and neglect.

GOTTSACKER: Stewart is a nurse, so she's had professional experience working with kids with autism and was eager to work with them personally, too, as a foster parent.

STEWART: And I knew that I would be able to give them the resources that they needed to succeed in life with my nursing background. I knew what kind of therapies they would need.

GOTTSACKER: So she signed up for a novel program, a treatment foster care partnership, where she learned about trauma-informed care and how to respond to tricky behaviors. Now, she's one of 10 treatment foster homes in her area licensed to care for kids with high behavior needs. There are a lot of kids in need of care like this, says Rachel Mackey with the National Association of Counties. She recently compiled a report on county priorities for the child welfare system and found that, in nearly every state of the country, there aren't enough foster families to care for all the kids that need help. And it's an even bigger challenge for county agencies to find foster care for kids with mental illnesses, intellectual disabilities and histories of juvenile delinquency.

RACHEL MACKEY: The continuum just doesn't support a lot of these youth at this moment in time, and that's why we have, you know, kids sleeping in hotels or in social workers' offices or overstaying at the ER.

GOTTSACKER: Melanie Allen, the director of the Department of Job and Family Services in Northwest Ohio's Sandusky County, is familiar with this struggle. She says it's gotten more intense since the pandemic.

MELANIE ALLEN: The problem we were having was we couldn't get a regular foster home to take a high-acuity 10-year-old. So we were placing kids younger and younger in congregate care.

GOTTSACKER: That's a problem for a few reasons, she says. For one, group homes aren't always the best setting for 10-year-olds to grow up in. Plus, they're really expensive. Allen knows of one child in particular that stayed in a group home at a cost of nearly $500 a day. When she moved to a foster home, the cost dropped to just $50 a day. On top of that, group homes can be hours from a child's biological parents, making it hard for them to visit. But if a child can stay in a local treatment foster home, parents can not only visit. They can learn how to manage their child's challenging behaviors by working alongside foster parents.

ALLEN: We want them to be able to transfer skills. We want them to be able to talk about - this is how I've managed to this behavior.

GOTTSACKER: But finding and training treatment foster parents isn't easy, especially for a small department like Allen's. So they partnered with neighboring counties to hire a shared social worker solely dedicated to the task. They've trained 10 treatment foster homes across a five-county area so far. Another five families are in the process of being licensed. And now, the state has dedicated $2 million to replicate this model across Ohio. It's another step in the effort to find foster families and treatment for children with disabilities and mental illnesses who need a home.

Read or listen to the full piece here

New Hope Village Staff Return Back To Work After Short Strike Over Dispute Of Wage Increases

By Abby Ward, Carroll County News, October 5, 2024   

New Hope Vocational staff returned to work on Thursday, following a meeting with the New Hope CEO on meeting demands after striking for not receiving the same raise as the rest of the New Hope Staff. It was on Sept. 26 that New Hope Direct Support Professionals (DSP) staff would all be receiving a raise, except for Vocational Staff.

In a letter sent to the vocational staff from CEO Jennifer Quigley, it states that the raises that vocational staff were given deemed to be fair and appropriate and that staff have been getting consistent raises over the last eighteen months, showing that management values staff members’ role and contributions to New Hope. Vocational staff were offered a two percent increase in wages that went into effect on Oct. 1. Staff members were displeased with the amount of the raise, demanding more respect, and being treated as part of a unified team as their other coworker counterparts.

Vocational staff disagreed that due to the training required for dayhab staff, job coaches, and job developers to have, as well as the filling in working in homes during staff shortages, a two percent increase was not adequate for the demand of the job. Most New Hope Vocational staff returned to work while still fighting for their rights because they wanted to do what was best for their clients.

Read the article here

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VOR SUPPORTS:

S.4120 / H.R.,7994 - The Long-term Care Workforce Support Act - This bill would increase FMAP and offer grants to all DSPs and caregivers for the elderly and for people with I/DD and autism. VOR worked with members of the Senate Aging and Diability Policy Committee and other peer organizations to improve this bill from its original form. It is not perfect, and it contains one major flaw to which we continue to object (the permanent reauthorization of the Money Follows the Person Rebalancing Demonstration Program) but we will continue to work to improve this bill and remove its flaws.

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:

H.R.8109 - To Make Permanent the Money Follows the Person Rebalancing Demonstration Program. MFP has been used to erode the ICF system. We call for congressional hearings, studies by the GAO, and audits by the Congressional Budget Office before any action should be taken to reauthorize this program.

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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