September 20 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.

SEPTEMBER IS VOR MEMBERSHIP MONTH

During September, we ask our supporters to reach out to friends, family, and members of their ICF family groups or sheltered workshops to bring new members into our family.

Please click here to join, renew, or give a gift membership to VOR

Please click here to download a letter about VOR that you may share with your family groups

Thank you for your support!

Upcoming Meetings of

The President's Committee for People with Intellectual Disabilities (PCPID)

September 26, 2024 9 am - 4 pm Eastern

September 27, 2024 9 am - 3 pm Eastern

The President's Committee for People with Intellectual Disabilities (PCPID) will host a meeting for its members to discuss the 2024 PCPID Report. The meetings will be held in-person in Washington, D.C. and on Zoom. All PCPID meetings, in any format, are open to the public. Members of the public can join in person or virtually. This meeting will be conducted in presentation and discussion format. The PCPID is overseen by members of the Administration for Community Living (ACL), and all meetings are facilitated by the ACL.

This year's report will focus on Home and Community Based Services (HCBS) and discuss emerging issues facing people with intellectual disabilities who receive services through the HCBS channel of Medicaid.

Once again, people with I/DD or severe autism who require ICF services or choose to work in 14(c) programs will not be included in the findings and recommendations of this committee.

We urge our members to sign up for the virtual meetings and make your presence known. Remember:

"If you don't have a seat at the table, you are probably on the menu."

Please click here to register for the Zoom meetings and to submit comments to the PCPID

Excepts from an Op-Ed, relevant to the composition of the members of the PCPID

The Problem with Lived Experience

By Naomi Schaefer Riley and Sarah A. Font, Quillette (via the American Enterprise Institute)

July 17, 2023

It is obviously a good thing to include people impacted, either positively or negatively, by systems and policies in the policymaking and evaluation process. This approach is increasingly applied in a variety of contexts, and has become particularly popular. “Lived experience” has been solicited and disseminated in ways that distort the conversation and promote policies that ignore data and evidence.

The irony of elevating lived experience is that, while it appears power is devolved to the speaker, power is often held by mysterious ‘Wizard of Oz’ type figures who select ​the people with lived experience to serve on advisory boards, testify to Congress, give media interviews, or otherwise disseminate their story. Individuals and groups with a platform—foundations, journalists, celebrities— are able to select and elevate specific lived experiences in ways your average person cannot. The selection of voices is never viewpoint neutral or without an agenda.

The personal story of an individual is used to motivate political or social change and is thus selected based on how much it conforms with the talking points of the person doing the selecting. Advocates who want to reduce congregate care (care provided in group or residential settings) promote stories of abuse in facilities. Those stories are real and heartbreaking, but when and how should they drive social policy?

[W]hen lived experience stories are presumed, without or despite evidence, to be representative, harmful policies can emerge. For example, one of the areas where lived experience has had the greatest influence in child welfare is congregate care. Although some people with lived experience touted congregate care as a positive experience for them, the highest profile voices have been negative and the individuals invited to testify to Congress have also shared negative testimonies.

Please read the full article, here, as the excerpts printed above tell a story from the perspective of families of people with severe/profound I/DD and autism who have been left out of the conversation by the PCPID and the Administration of Community Living. The original article had been intended for a different audience experiencing a parallel problem.

Black Hills Works, an organization supporting nearly 600 adults with disabilities in Rapid City, employs over 280 direct support professionals. Each of them empowers people with disabilities to be good neighbors, valued friends, productive workers, respected leaders, and caring volunteers. “I get to experience life with them,” shares Skylar, a DSP with Black Hills Works. “I see the joy in a person’s eyes when they do something new, which is so rewarding!”

Direct Support Professionals’ work is complex and goes well beyond caregiving. Required skills include independent problem solving, behavioral assessment and prevention, medication administration, health and allied health treatment, teaching new skills, crisis prevention and intervention, and more. “DSPs are a constantly evolving mix of teachers, medical support, social bridge, activity facilitators, and social skill teaching. We help people reach their potential,” Skylar explains. The job duties of a DSP may resemble those of teachers, nurses, social workers, counselors, physical or occupational therapists, dietitians, chauffeurs, personal trainers, and others. 

Every day, the job is a little different as their work is determined by the unique needs and preferences of the individuals they support. “My favorite part of the job is teaching people so they know they are capable and are able to do as much as possible for themselves!” says Skylar.

Because of the vital role DSPs have in the lives of adults with disabilities, they are held to high ethical and professional standards. Over the last year, Black Hills Works has implemented a “Strong Teams Initiative” in their onboarding processes. This is a three-tiered initiative aimed at ensuring DSPs have the tools they need to feel competent and supported. The tiers focus on education, experience, and support.

People supported are not the only ones that experience benefits from the work of DSPs. “I have grown through my work,” shares Skylar. “I have developed more empathy, social skills, and teaching skills.” Sheila, another DSP at Black Hills Works, shared that, when you’re employed as a DSP, “The positivity you receive from the people we support makes it all worth it. You know you are making a difference! The training you receive and the team you’ll be working with are phenomenal! At the end of the day, we are all in this together to ensure the people we support are living their best lives.”

Read the full article here

Last month, the Washington Post ran a series of articles opposing shelteered workshops that operate under Section 14(c) of the Fair Labor Standards Act in providing employment opportunities for individuals with intellectual and developmental disabilities and autism.

Not only did the Post endorse an extremely biased opinion condemning sheltered workshops, they also politicized the issue.

Here, in response, are a highly politicized rebuttal from another Washington newspaper, and three letters to editors from three separate Voices of Reason.

Democrats Target Workshops for the Disabled

By Timothy P. Carney, The Washington Examiner, September 14, 2024

Tens of thousands of people with severe disabilities enjoy productive jobs thanks to an array of public assistance, nonprofit charity, and federal labor laws.

Vice President Kamala Harris has pledged to outlaw those jobs, and the Washington Post has launched a campaign against them. President Joe Biden’s Labor Department is planning to introduce new rules this month altering the program.

The contention is over a federal law that creates a special minimum wage for disabled workers in extreme circumstances. Most of these workers, who generally could not perform in an ordinary workplace, are employed in workshops run by nonprofit groups, performing simple tasks and being paid a piece rate for their work rather than an hourly wage.

The resulting wage is generally below the federal minimum wage, but these jobs aren’t supposed to provide anyone with a living — the recipients all receive Medicaid and many other public benefits. The primary value of these special jobs is providing purpose, skills, camaraderie, and a small sense of independence for adults whose severe disabilities make it impossible for them to live fully self-sufficient lives and hold on to competitive jobs for the standard employer.

Nevertheless, these programs are under fire from disability groups and labor unions: the Service Employees International Union, a massive Democratic-aligned labor union, has been lobbying since the Obama administration to eliminate them. Just this month, the Washington Post began an assault on the program.

The Democrats and the Washington Post’s campaign against this program is baffling to those in the trenches. “I honestly and truly have no idea why they are trying to do this,” said David Ordan, CEO of the IKE Center, a Milwaukee nonprofit group that runs a bakeshop making dog treats and is staffed by adults with severe disabilities. “I cannot figure out the logic behind it.”

On the surface, this is a policy disagreement over the best way to help the severely disabled. On a deeper level, though, this reflects philosophical differences about the inherent value of work and the nature of fairness. It also tells a story about special interest lobbying in Washington and undermines the Left’s claims to be the champions of the most needy.

Special wages

Section 14(c) of President Franklin D. Roosevelt’s Fair Labor Standards Act created this system of special jobs for the severely disabled. Employers of the severely disabled can apply for a certificate that exempts them from ordinary minimum-wage laws and creates a special minimum wage for workers engaged in certain jobs.

The special minimum wage applies to piece-work jobs, such as sorting and packaging items for shipment, and there are strict and detailed rules dictating these wages.

Employers must first determine the rate at which an experienced able-bodied worker would execute a task — say, filling a box with dog treats and sealing it.

Then, the workshop must determine the prevailing wage, which is far higher than the minimum wage, in its area. If the experienced worker can package 100 boxes of dog treats in an hour, including a 10-minute break, and the prevailing wage is $15 an hour, then the piece rate would be 15 cents per box ($15.00 divided by 100 boxes).

The Washington Post attacks this arrangement this way: “Tens of thousands of disabled people in United States are paid less than the federal minimum wage — with some workers making as little as 25 cents per hour.”

This framing is intended to imply that employers are exploiting the disabled. “How is this happening in 2024,” a liberal civil rights lawyer cried on X, “and why isn’t this at top of list of policies to halt yesterday?”

The answer to “how is this happening?” is not complicated: There exist tens of thousands of adults whose disabilities preclude them from holding competitive jobs in integrated workplaces. The 14(c) law allows nonprofit groups to pay them for their work as part of a broader network of support.

Lisa Liston is the special services coordinator at Clelian Heights, a Catholic institution for disabled adults. Her daughter Sarah works in a 14(c) program. “Quite honestly, the money is not what’s important to Sarah and to most of the folks down there,” Liston said. “It’s the pride. It’s the time with friends.”

Critics, though, argue that everyone in a 14(c) workshop should be sent out into the competitive workforce. Many workers do graduate from 14(c) workshops into what is called “competitive integrated employment,” and tens of thousands of disabled workers have found market-rate jobs in ordinary workplaces. But for others, that’s simply not a possibility.

Sarah Liston, for instance, has autism, suffers from migraines, and requires 24-hour assistance. She clearly benefits form her workshop job and simply could not hold down a competitive $8-an-hour job in a competitive integrated workplace.

“People that have been here a very long time have been here a very long time for a reason,” said Colleen Stuart, who runs the Venango Training and Development Center in Seneca, Pennsylvania. Stuart is leading the fight to save 14(c), heading the Coalition for the Preservation of Employment Choice.

The workshops are often integrated with the workers’ housing, which is valuable. Many of the workers require extraordinary assistance, such as help using the bathroom and help being fed, Ordan and Stuart explained. “They can’t really work in the community without massive support,” Ordan said.

Please continue reading here

VOR Members Respond to Washington Post Series Opposing Sheltered Workshops

On August 30 and September 2, 2024, the Washington Post published a series of highly biased articles opposing sheltered workshops and 14(c). The articles went beyond mere bias. They cherry-picked comments from both sides and made several statements misrepresenting the programs and those that provide these opportunities. Several VOR members wrote to the Post to complain. The Post did not print any of the responses.

But one VOR member who was interviewed by the Post reporters, but who was quoted completely out of context, posted the response the Post refused to print on his company's website. It may be read here. Another member, wrote to the Arkansas Press-Democrat, in response to their reprinting the letters. Her letter may be found here. A third VOR member, a board-certified Neurolologist, wrote a letter that was endorsed by several advocacy groups, individuals, and families. It may be found on our website, here.

Read the three letters from VOR members here

Recently, the United States Department of Justice brought action in Maine, on the basis that the state was warehousing individuals with I/DD and autism in inappropriate institutional settings instead of HCBS group homes.

Most VOR members remember the tragic consequences of past actions by DOJ, resulting in the unnecessary deaths and inappropriate placements of vulnerable individuals in Georgia, Virginia, Iowa, and several other states.

Below are two articles relating to this issue - the first from the parents who brought DOJ in to intercede on their behalf, the second describing what the State of Maine is trying to do to keep DOJ from making a bad situation worse.

We sincerely hope for the best outcomes for all invoived.

Maine - 'I hope it makes a difference': Parents who helped spark DOJ lawsuit speak out

By Vivien Leigh,News Center Maine, September 13, 2024

Parents of Maine's most vulnerable children are speaking out after the feds filed a lawsuit against Maine for violating the Americans with Disabilities Act.

The U.S. Department of Justice alleges that the state's failure to provide treatment beds and services has left dozens of kids with mental health problems and developmental disabilities stuck in ERs statewide.

Advocates say millions in federal funding are at risk if changes aren't made soon to settle the case.

DOJ civil rights attorneys will meet with impacted families on Zoom next Wednesday to discuss the lawsuit and listen to parents' concerns. 

Kristine Adams's son Christian has severe autism, is nonverbal, bipolar, and has other challenges. The 21-year-old who lives in a group home went into crisis earlier this spring.

"He threw all of his toys out of the window and his clothing, and he was leaning out of a second-story window. I was afraid for his life," Adams said, holding back tears.

He ended up at Maine Medical Center for 10 days, waiting for a treatment bed at Spring Harbor, which is the state's only residential program that accepts children and school-age patients with intellectual and developmental disabilities. 

This was Christian's second trip to the ER. He spent three weeks in the ER in 2021. This time, though, his mom had enough. 

"Why isn't there any help for him? Why isn't there a crisis bed for him? There are beds available, but not for my son?" Kristine asked.

She sent this letter about Maine's lack of treatment beds and services for people with disabilities to the Disability Rights Section of the Civil Rights Division of the U.S. Department of Justice. She said she believes her complaint helped spur a lawsuit filed by the DOJ this week. It accuses Maine of segregating children with behavioral health problems and disabilities in hospitals, residential facilities, and the Long Creek Youth Development Center.

On average, the lawsuit says children and teens with behavioral problems are waiting six months to a year to receive services. 

Nancy Cronin, executive director of the Maine Developmental Disabilities Council, is on a blue-ribbon commission examining DHHS's behavioral health care system more closely.

"I hope this lawsuit will create urgency. If it doesn't, things will worsen," Cronin declared.

Continued

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Maine - Lawmakers seek to reform Maine’s child disability services in wake of federal lawsuit

By Joe Lawlor, the Portland Press-Herald, September 17, 2024

A blue ribbon commission of the Maine Legislature on Tuesday discussed ways to reform services for children with disabilities and older adults a week after the U.S. Department of Justice filed suit against the Mills administration for failing to provide disabled children access to services.

State Rep. Dan Shagoury, D-Hallowell, said the Justice Department lawsuit will hopefully spur much-needed changes.

“Within the past week, an 800-pound gorilla fell into this room,” Shagoury said, referring to the lawsuit.

The 13-member commission, which the Legislature created in July 2023 to study the organization and delivery of services by the Department of Health and Human Services, met for the sixth time Tuesday and is scheduled to meet twice more – Oct. 7 and Oct. 30 – before formulating its final recommendations.

While Mills administration officials have expressed disappointment with the lawsuit, they also have said they are continuing discussions with the Justice Department to try to settle the lawsuit.

The lawsuit – if it’s not settled – could result in a trial or a consent decree, under which some DHHS programs are taken over by a court.

The lawsuit, filed on Sept. 9 in U.S. District Court in Portland, says that too many children who are entitled to receive community-based care are on monthslong waiting lists, languishing in hospital emergency departments or in other institutions. Long Creek Youth Development Center is being used as a “de facto children’s psychiatric facility,” the lawsuit says.

More than 400 children are on waiting lists for certain behavioral health and developmental disability services, according to the lawsuit.

“Absent these services, Maine children with disabilities enter emergency rooms, come into contact with law enforcement and remain in institutions, when they could remain with their families if Maine provided them sufficient community-based services,” the Department of Justice said.

The blue ribbon commission, which is made up of lawmakers, advocates and state officials, is tasked with coming up with solutions to improve DHHS’ services, including services for children and older adults.

Nancy Cronin, executive director of the Maine Developmental Disabilities Council, a quasi-governmental agency funded by federal and state dollars, presented an eight-point plan to improve services for children with disabilities.

She said there are many gaps in services, and the services are often “siloed” so children who have complex needs – such as those with co-occurring medical conditions, mental health challenges and intellectual disabilities – fall through the cracks.

The result is a “disjointed, transactional experience with multiple programs with multiple doors and rules,” she said.

“These unsynchronized programs create real risks for children to fall through gaps,” Cronin said.

Cronin said that DHHS should create a management-level position whose sole responsibility is to merge or coordinate various systems so that children can get the help they need.

Continued

House Votes To Renew Autism Act As Expiration Nears

By Michelle Diament, Disability Scoop, September 19, 2024

Congress is one step closer to re-upping the nation’s primary autism law with little time remaining before it’s set to expire.

The U.S. House of Representatives voted Wednesday 402-13 to pass the Autism Collaboration, Accountability, Research, Education and Support, or Autism CARES, Act of 2024.

The bipartisan bill, which represents an agreement between House and Senate lawmakers, would allocate more than $1.95 billion over the next five years for research, prevalence tracking, screening, professional training and other government activities related to autism.

The law originated in 2006, but the current version is set to sunset Sept. 30.

“While significant progress has been made in understanding and accepting autism, much work remains to ensure that all autistic individuals have access to services and supports tailored to their unique needs,” said Christopher Banks, president and CEO of The Autism Society of America. “The Autism CARES Act of 2024 addresses key areas such as research on autism and aging, services for those with more complex needs, communication challenges and the shortage of developmental pediatricians — all crucial steps toward improving the lives of autistic individuals.”

The bill passed by the House this week would renew many existing autism-related programs and direct the National Institutes of Health to ensure that research reflects the full range of cognitive, communicative, behavioral and adaptive functioning needs of those on the spectrum. It would grow the number of NIH Centers of Excellence, require the NIH to produce an annual budget plan for autism research and it includes efforts to promote the adoption of assistive communication.

The measure also mandates a government report on ways to increase the number of developmental behavioral pediatricians as well as one looking at youth aging out of school.

Even with House passage, the legislation must still be approved by the Senate and signed by President Joe Biden in order to become law.

Continued

Note: While the current bill does not include specific language denoting Severe or Profound autism, it does recognize a wider spectrum of individuals with autism. In current parlance, it may be said to include the 'concept' of severe or profound autism.

Biden Administration Expands Insurance Protections For Those With IDD

By Michelle Diament, Disability Scoop, September 16, 2024

New federal rules could soon bring big changes to health insurance coverage for individuals with autism and other developmental disabilities.

The U.S. Departments of Labor, Health and Human Services and Treasury said this month that they are issuing final rules clarifying implementation of the Mental Health Parity and Addiction Equity Act.

The 2008 law requires many insurance plans that cover mental health or substance use disorder to offer benefits for those services that are comparable to what’s provided for medical or surgical services. Despite the promise of the law, however, federal enforcement efforts show that accessing mental health care often remains more challenging than other health services, prompting the updated rules, the Biden administration said.

“Health care, whether for physical or behavioral conditions, is health care. No one should receive lesser care for one or the other. That’s the law. The rules we issue today make that clear,” said Health and Human Services Secretary Xavier Becerra.

Under the new rules, federal officials are clarifying that autism, intellectual and neurodevelopmental disorders and all other conditions listed in the mental, behavioral and neurodevelopmental disorders chapter of the current International Classification of Diseases or the Diagnostic and Statistical Manual of Mental Disorders must be included under the definition of “mental health benefits” for plans and coverage.

“This is an important designation because it targets contradictory guidelines from certain states or other authorities that have been used to deny parity protections to those with autism,” said Alexandra Smith​​​​, director of grassroots and advocacy communications at Autism Speaks. “For example, under Texas Medicaid, autism is categorized as a medical/physical condition, meaning enrollees with autism do not currently have the rights afforded by MHPAEA.”

Parity protections are important, Smith said, because they prohibit plans that cover mental health care from discriminatory practices such as excluding or limiting coverage of applied behavior analysis or habilitative services like speech, occupational or physical therapy. In addition, the law requires that insurers have adequate provider networks, so if developmental pediatricians or other needed specialists are not made available in-network to treat those with mental health conditions, there are steps patients can take to have out-of-network providers covered as in-network.

Continued

New Jersey - Fed-up families say N.J. ignores abuse in group homes. But that may change soon.

By Susan K. Livio, NJ Advance Media, September 18, 2024

Jennifer readily admits her 24-year-old son, incontinent and diagnosed with autism and psychiatric disorders, is “not easy.”

But she says it’s outrageous that he was assaulted and neglected in each of three group homes in which he has lived. One day last year, he took off his clothes, slipped out a first-story window and fled from the group home in Burlington County without staff noticing, according to a police report of the incident.

“I call the (state) hotline and they know me by name. But they do nothing,” said Jennifer, who requested anonymity to protect her son from retaliation. “They are not creating a safe environment, where they have medical and behavioral care. It’s glorified babysitting.”

Jennifer represents a growing chorus of parents in New Jersey who are disgusted with what they see as the lack of accountability from group home operators, as well as the state regulators that oversees them.

This week, a pair of longtime disability advocates released their own blueprint for how the state should make group homes safer. It lands at the same time a prominent lawmaker and officials from Gov. Phil Murphy‘s administration officials confirm they are close to introducing proposals to improve scrutiny of the group home industry.

New Jersey regulators should be given the legal authority to fine group homes that have abused and neglected people with developmental disabilities “in violation of the civil and human rights,” according to the report by Donna Icovino of Bucks County, Pennsylvania, and Cyndy Hayes of Burlington County, parents with disabled sons who now live in safe group homes after difficult experiences.

They also urged the state to transfer the internal investigative responsibilities of group homes, psychiatric facilities, state-run developmental centers — any place where people with developmental disabilities live — to the state Attorney General’s Office.

Involving the Attorney General’s Office would remove what they see as a conflict of interest between group home providers and the state departments of Human Services and Children and Families, which license group homes but are also dependent on the industry to house nearly 10,000 people with developmental disabilities.

With this conflict, “Even the most well-intentioned efforts to resolve the issues related to abuse and neglect continue to fall further out of reach, putting the well-being of children and adults with intellectual and developmental disabilities in dire jeopardy,” Icovino said.

There are many obstacles to reporting abuse and neglect, according to the report. The residents themselves may not understand what is happening or be able to speak up for themselves. Staff members who witness mistreatment want to help fear retaliation.

“Even when individuals or their staff do report incidences of Abuse and Neglect, these allegations are not given the same level of criminal or legal justice as neurotypical people are afforded,” according to the report. “Individuals with complex severe behavioral health conditions are at greater risk of being abused, because of the acute nature of the challenges they experience. These are just a few of the many reasons why we need to be extra vigilant and provide specific training and supervision when it comes to overseeing all aspects of an individual’s care and staff support.”

Continued

Editorial: Bring Transparency to California Disability Centers

By the Editorial Board of the Press Democrat, September 15, 2024

The nearly two dozen state-funded and state-established nonprofits that provide services to Californians with intellectual and developmental disabilities should never have been excluded from the state’s public records requirements. That’s become increasingly apparent as report after report finds serious shortcomings in the delivery of those services.

Gov. Gavin Newsom should seize the opportunity to shed further light on the regional centers by signing Assembly Bill 1147, a scaled-back version of a broader reform bill designed to improve a system that has too little oversight and far too many chronic problems.

The centers, the first of which were established in 1969, help coordinate services and protect the rights of people with autism, traumatic brain injuries, cerebral palsy, epilepsy and other conditions. More than 450,000 California currently receive assistance from the centers, which get over $15 billion a year in state and federal funding.

The bipartisan bill would subject the nonprofits to the California Public Records Act. In particular, the records of applicants and service recipients would become available to those individuals or authorized representatives.

The North Bay Regional Center, created in 1972, serves about 10,000 people in Sonoma, Napa and Solano counties. Among them are former residents of the Sonoma Development Center, a live-in facility that served 300 residents. It was closed in 2018 as part of a statewide shutdown of similar centers.

Heightened and consistent scrutiny of the nonprofits is certainly warranted. A state audit of three centers, including North Bay, in 2022 found that they have exceeded maximum caseload ratios for service coordinators for decades.

The report faulted the state and the Department of Developmental Services for essentially freezing coordinator salaries in 1991 and not ensuring sufficient staffing to address the growth in caseloads.

Additional problems were found in vetting service providers. The North Bay center also was criticized for failing to inform recipients and their families about their right to file complaints and for promptly following up on complaints.

Continued

Utah - Special Needs Registry Essential for First Responder’s Success

By Carlysle Price, KSL TV, September 13, 2024

Cities across Utah are asking community members to register those who are at-risk or have special needs to provide information to emergency response agencies.

Registering relevant information, such as functional needs and special needs, can help first responders during a crisis. It can provide emergency personnel with the most beneficial and appropriate response for individuals who may require assistance during a police, fire, or medical emergency.

“By participating, you’re helping us ensure we have the most accurate and helpful information to respond quickly and appropriately,” The Payson Police Department said in a Facebook post about its Special Needs Registry.

Who can use the registry?

According to the Payson Police Department, there is a wide range of people who are encouraged to register.

• Individuals with Autism
• Those who are deaf or hearing impaired
• Those with mental or intellectual disabilities
• Individuals with Dementia or Alzheimer’s
• People with cognitive impairments
• Individuals facing struggles with their mental health
• Paralysis/stroke patients
• Those with life-threatening allergies

How to register

Special Needs Utah has a website where Utahns from any area can fill out an online form. The form’s information is not available to the public, and will only be shared with emergency response agencies to improve their ability to serve.

Continued

Mental health-related leaves of absence common among family caregivers

By Kathleen Steele Gaivin, McKnight's Senior Living, September 20, 2024 

Mental health, even more than physical illness, is the most common reason workers require medical leave following a leave of absence to care for a family member, according to a new study.

Surgery was the second most common reason for a subsequent medical leave, according to ComPsych Corp., a provider of mental health and absence management services.

“The data shows one in five people take their own medical leave of absence less than two years after a caregiving leave, which is shocking and should serve as a wakeup call to us nationally,” ComPsych Clinical Director Jennifer Birdsall, PhD, ABPP, stated. “From the emotional drain it can cause to the physical demands of competing priorities or helping another person with basic daily functions, caregiving puts people under a tremendous amount of stress.”

Employers should be aware of this “caregiving cliff,” according to the company, as an increasing number of workers are caring for both parents and adults.

“It’s vital that we better support and prioritize caregivers, ensuring they’re able to care for themselves both mentally and physically while they also assist their family members,” according to the report.

Continued

Please share this offer with your loved one's

Direct Support Professionals!

VOR ❤️s OUR

DIRECT SUPPORT PROFESSIONALS!

Our loved ones' caregivers are essential to their health, safety, and happiness.

In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.

We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.

If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at

info@vor.net

with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.

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

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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