October 14, 2022

VOR's Fall Membership Campaign

For the past forty years, VOR has spoken out in support of high quality care and human rights for all people with intellectual and developmental disabilities.

Over these years, the numbers of people receiving care in Intermediate Care Facilities or benefiting from employment opportunities in vocational centers using 14c certificates have declined. And VOR's membership has declined accordingly. 

But VOR does not advocate solely for people in ICFs or commensurate wage programs. We advocate for family caregivers, for people with autism, for individuals with complex medical conditions and rare diseases. We speak out for individuals and families whose needs are not bing met by the disability systems that are supposed to help them. We support all Direct Support Professionals, regardless of the nature of the facility in which they serve.

The nature of disability services may have changed over the years, but the need to advocate for those who have no voice remains unchanged.

VOR continues to be a

Voice Of Reason,

speaking out for all people with intellectual and developmental disabilities and autism.

Please help us to help you.

Please click here to Join, Renew, Donate, or Give a Gift Membership

October is National Disability Employment Awareness Month

“A job is about a lot more than a paycheck. It’s about your dignity. It’s about respect. It’s about your place in your community.”

 - Joe Biden, August 20, 2020

VOR supports all opportunities for employment for individuals with intellectual and developmental disabilities. We advocate for programs that increase competitive integrated employment with the understanding that there is a need to preserve employment opportunities for those who are unlikely to be accommodated by most companies that do try to provide jobs to those with I/DD and autism. 

Vocational centers and 14(c) Certificates are unique employment opportunities tailored to meet the needs of individuals with I/DD and autism. In these facilities, job coaches are equipped to help our loved ones develop skills and productivity, while having the DSP training to address the physical, behavioral, and hygienic challenges that arise during the course of a day.

October is the month celebrate Employment Awareness for people with I/DD and autism. Let us increase all employment opportunities, as part of true person-centered planning for all of our loved ones, not just those who are readily accommodated into competitive integrated employment programs. 

VOR advocates on behalf of all Direct Support Professionals, Doctors, Nurses, Psychiatrist, Physical and Behavioral therapists - anyone who devotes themselves to the care of the most vulnerable. We realize that all of these caregivers deserve our support, whether working in a state-operated ICF, a private ICF, an HCBS group home, a farmstead, or serving people in their own homes or family homes. We support caregivers for all populations, knowing that caregivers for the elderly, for those with serious medical conditions, for people with I/DD or autism, or for people with physical challenges or sensory disabilities all deserve our respect and our commitment to help them receive better wages and training, in order to follow a career path that enables them to care for their own families, as well as ours. 

We understand that the Caregiver system sorely needs a major overhaul, and that Congress' determination to help only those who work in HCBS settings and not those who serve in nursing homes or skilled nursing facilities is not the answer to the DSP crisis. 

We hope our readers will view the two articles below as an indication of the broader effects of the DSP shortage, and help spread awareness of the depth and breadth of this crisis. 

Opinion: Care Work is in Crisis.

That’s a Disaster for the Rest of the Economy

By Catherine Rampell, The Washington Post, October 13, 2022 

How about getting some of that sweet, sweet industrial policy for an industry that really needs it?

Not manufacturing plants. Not the tech sector. I’m talking about the “care” industry — the sector that’s needed to grease the wheels when it comes to the rest of the economy but one that Congress has largely ignored.

The U.S. economy has more than recovered all the jobs lost in the pandemic. But there are a few sectors that are not close to recovering all the workers they lost or laid off early in 2020. Among them: child-care providers (whose ranks have begun shrinking again in recent months) as well as nursing and residential care facilities.

Both of these industries employ about 10 percent fewer workers today than was the case pre-pandemic. Collectively they’ve lost almost half a million jobs on net since February 2020.

The economy overall has more jobs today than it did pre-covid.

But the care economy remains a shadow of its former self.

Home health-care services employment is up by 34,000 jobs, or 2 percent. But that growth is not fast enough to offset the hundreds of thousands of comparable positions lost in nursing homes or to meet skyrocketing demand for elder care as the country ages.

The need for care workers is vast. But few people are willing to take these positions, at least in exchange for the meager pay offered.

The key problem is the enormous gap between what it costs to pay a living wage, and what families can afford. Caregiving — whether for elderly patients, or young children — is extremely labor-intensive. The labor itself is emotionally and physically demanding. And care recipients often cannot absorb the full cost of these services on their own.

The result is prices that are too high, and yet not high enough: The typical cost of sending a young child to day care, for instance, already topped the cost of in-state college tuition, even before the current crisis. Still, child-care workers continue to earn less per hour on average than animal caretakers do.

No wonder, then, that amid widespread labor shortages, and workers’ demands for higher wages, nursing homes and child-care facilities are having difficulty holding onto staff. Even a one-time cash infusion from Congress as part of the American Rescue Plan has not been sufficient to repair the child-care industry; it temporarily stanched the bleeding, but the sector has again shed jobs each of the past two months.

Sustained public funding of some kind is needed to bridge this chasm. Politicians periodically propose such subsidies — as President Biden did last year for both child-care and elder-care investments — but plans to build out the care economy inevitably get deprioritized.

That’s shortsighted. Problems in the care economy cascade into every other industry. A lack of affordable care options pulls workers from other fields — especially women, who are more likely to be their families’ primary caregivers — out of the labor force. This is among the reasons American women are less likely to participate in the labor force than their counterparts in other rich countries, which have more robust safety nets.

There should be a broad constituency in favor of care-economy investments, be they moms who are struggling to provide care for kids and/or aging parents; or employers in need of workers today, or years down the road. Unsurprisingly, key business groups have thrown their support behind investing more in the care economy, particularly child care.

Yet for some reason, politicians remain largely unmoved.

They’re not skittish about using the power of the state to direct resources toward other industries that free markets alone apparently can’t sustain. “Industrial policy” is increasingly in vogue with both parties — but only for traditionally “manly” industries, it seems. The past two years have seen big bipartisan bills appropriating federal funds for semiconductor manufacturing, electric-vehicle charging stations and other physical infrastructure — with the justification that Uncle Sam needs to make targeted industrial investments to help the rest of the economy grow.

America’s care safety-net was always threadbare. In the pandemic it unraveled. Today, as American consumers and employers struggle with rising costs, worker shortages and recession risks, the care economy still needs significant government investments so that other industries can thrive, too.

Read the full opinion piece here

Nursing Homes face ‘Sustainability’ Challenge after Sector Loses 7% of Nursing Hours, Despite Doubled Agency Use

By Joe Bush, McKnight's Long-Term Care News, October 10, 2022

Median operating margins for skilled nursing facilities dropped in 2021 from 2020 levels — both when factoring with and without public health emergency funding — according to the 37th SNF Cost Comparison and Industry Trends Report delivered by accounting firm CliftonLarsonAllen on Friday.

That is just one ominous sign emerging from the report issued by the top industry examiner. 

Excluding the impacts of public health emergency (PHE) funding, said the report, the median operating margin of SNFs decreased in 2021 to a negative 2.7%. The 2021 median operating margin, both including and excluding recognized PHE funding, decreased substantially (3.1% to 2.6% including and negative 1.6% to negative 2.7% not including) from 2020 medians.

The report’s numbers depicting the staffing situation were stark.

Approximately 100 million fewer nursing hours were paid within the SNF industry from 2020 to 2021 — a 7.5% reduction. That includes hours of both in-house staff and contract labor.

“Pre-COVID, SNF operators would have listed access to permanent direct care nursing as a top-three priority and concern, and the post-COVID environment escalated this pressure point significantly,” report authors wrote. “The SNF industry has a tougher time accessing labor and maintaining their workforce compared to other sectors of health care.”

The use of contract labor didn’t begin with the pandemic, the authors pointed out. It increased 19% between 2017 and 2018 and jumped 24% between 2018 and 2019 before skyrocketing the last three years. 

“COVID and the pursuing inflationary economic environment significantly accelerated that trend,” the report noted. “In 2021, 5.5% of all nursing hours were filled by contract labor, which is an 83% increase from the median 2020 contract labor utilization.”

The decreased supply of direct care nursing resulted in approximately two-thirds of SNFs resorting to nursing contract labor in 2021, about a 50% increase compared to 2019, according to the report.

The Biden administration’s plan to impose minimum staffing levels has added another looming obstacle.

The CLA report noted that if such a mandate stipulated 4.1 nursing hours per day, the impact would include:

• 94% of nursing homes would need to increase staffing levels to be in compliance.

• The tab could be $10 billion a year.

• More than 187,000 additional nurses and nurse aides would need to be hired to meet the standard.

Continued

From our friends at the National Council on Severe Autism

NCSA Letter to IACC: Stop Sanitizing Autism

October 12, 2022

Re: Public Comment for October 2022 IACC Meeting

Dear Dr. Gordon:

The Interagency Autism Coordinating Committee’s recent discussions, including those regarding development of the Strategic Plan, have been a disappointment. The sessions were often dominated by issues relevant only to the highest functioning slice of the autism population, with scant content devoted to the realities, needs and priorities of the great majority of U.S. autism families.

We were also alarmed to see members angling to cleanse the Committee’s (and Plan’s) language of basic, accurate and meaningful terminology like “behavior,” “risk for autism” and “quality of life,” suggestions which were treated seriously by IACC leadership. As Dr. Daniels stated, staff was actively working to remove words like “risk” and instead highlight resilience and strengths-based language in the forthcoming Plan. The clear trend here is toward a Plan that treats autism as a neutral condition or difference. But Congress did not pass the CARES Act because autism is a neutral or strengths-based condition. 

Congress allocated millions of tax dollars to research because it is increasingly urgent to identify causes and treatments for the serious disorder of autism that imposes incalculable costs on our families and service systems, not because it is a neutral variant of brain functioning. 

That a child with autism cannot learn to speak or develop abstract thought is not a neutral issue.

That a child with autism engages in self-injury or perpetually elopes or destroys property is not neutral.

The abnormal neurogenesis, neural migration, synaptogenesis, and neural connectivity evident in autism are not neutral biological phenomena.

That countless siblings live in fear of being attacked by their brother or sister with ASD is not neutral.

That a child with ASD faces life-threatening seizures, pica or gastrointestinal distress is not neutral.

That a child with autism suffers unrelenting insomnia causing family-wide sleep deprivation is not neutral.

That parents must sacrifice careers, incomes and their own independent lives to permanently care for seriously disabled children and adults with autism is not neutral.

When children autism lack basic safety awareness, to the extent they may rigidly refuse to exit a burning house, their disorders are deadly and certainly not neutral.

That growing numbers of adults lack basic cognitive functions to live independently is not neutral.

The steady growth of autism prevalence, now closing in on 3% of U.S. children (and 5% in some areas) is a national crisis and not remotely neutral.

That we suffer a terrible shortage of inpatient placements, crisis care centers, child and adult psychiatrists, medical personnel trained in autism, and residential support centers to treat the surging population disabled by autism is not neutral.

There is nothing inclusive about neutral or strengths-based language that specifically excludes or denies realities of autism, particularly severe autism. This is a high-stakes debate. We must ensure all federal efforts relating to autism are based on reality, not fantasy. If we must be neutral about autism we cannot emphasize the most urgent priorities facing our community, to wit:

• What is causing the continuing surge of autism cases, particularly moderate to severe cases requiring lifelong intensive supports?
• How can we characterize the different segments of the autism population by level of adaptive function, behaviors and other characteristics so we can project nationwide care, support, and housing needs 5, 10, and 20 years out?
• How can we reduce risk for or prevent autism in successive children, and in later generations?
• How can we bend the course of autism to ensure the best, most functional outcomes possible?
• How can we stop severe life-ruining and sometimes lethal behaviors such as aggression, self-injury, pica and elopement?
• How can we address the autism services, housing and staffing crisis affecting every state?

While the IACC neutralizes language about autism, families on the other hand rely on medical necessity, and the neural and behavioral impairments, disorders and pathologies underlying it, to attain desperately needed supports. For most of us in the real world, impairments, dysfunctions, deficits, disorders, dependency, and not “strengths,” define the daily experience of autism.

The IACC was intended to encompass the representation of the entire population disabled by autism to tackle the serious national crisis engulfing our families and communities, but the unbalanced slate of membership of the committee has led to a highly distorted discussions about priorities for federal agency efforts.

We trust that in spite of this, the IACC and Strategic Plan will be fully inclusive of all realities of autism, including severe forms of autism, focusing on true community priorities, using language that accurately captures our community’s dire realities, and that has not been sanitized. 

Thank you for your consideration of our concerns.

Signed,

Board of Directors of the NCSA,   - Jill Escher, President

Read the NCSA Letter here

Following up on our lead article from last week, here is a synopsis from Disability Scoop on the case coming before the Supreme Court that could severely restrict the rights of people with disabilities.

Supreme Court Case Could Sharply Limit Disability Rights

By Michelle Diament, Disability Scoop, October 10, 2022

Disability advocates are warning that a case going before the U.S. Supreme Court could severely threaten the rights of millions of people who rely on Medicaid and other government programs. At issue is whether beneficiaries of programs like Medicaid have the right to sue state and local governments — or essentially have any form of recourse — if their civil rights are violated.

The case known as Talevski v. Health and Hospital Corporation of Marion County was brought by the estate of Gorgi Talevski, who is no longer living, alleging that he was chemically restrained and medicated so that he would go to sleep instead of being treated for his dementia while living in an Indiana nursing home.

A lower court determined that Talevski’s estate could sue under the Nursing Home Reform Act provisions of Medicaid, but the Health and Hospital Corporation of Marion County, or HHC, appealed to the Supreme Court arguing that nursing home residents shouldn’t be able to bring suit in federal court.

The case is now scheduled to be argued before the high court Nov. 8.

For decades, disability advocates say that the Supreme Court has recognized the ability of beneficiaries to sue if their rights under a whole host of safety net programs are violated. A court ruling in HHC’s favor would change that.

“With Talevski, the Supreme Court could cut off the right to go to court if state officials unlawfully deny, reduce or terminate benefits guaranteed by federal law. This would make it nearly impossible to hold state and local governments accountable for violating the rights of those depending on federally funded safety net programs,” reads a petition from the Bazelon Center for Mental Health Law and a handful of organizations in Indiana that are pushing back against HHC.

The impact would be far reaching, advocates say, affecting millions of people who rely on everything from Medicaid to the Supplemental Nutrition Assistance Program, the Children’s Health Insurance Program, Temporary Assistance to Needy Families and more.

Groups supporting the Talevski estate say the case could also influence the right to sue under Title IX of the Education Amendments of 1972, which bars discrimination based on sex, as well as Title VI of the Civil Rights Act, which speaks to discrimination based on race, color or national origin, and Section 504 of the Rehabilitation Act, which prohibits disability discrimination.

[A]dvocates are pressuring HHC to drop the case. Jalyn Radziminski at the Bazelon Center said more than 13,000 people have emailed HHC and elected officials in Marion County, Ind. — who appoint members to HHC’s board — urging them to withdraw the matter.

More than 20 amicus briefs supporting the Talevski estate have been filed by groups including the Bazelon Center, The Arc, the American Association of People with Disabilities, AARP and top Democrats in Congress.

“This case is no joke,” said Jane Perkins, legal director at the National Health Law Program, which filed an amicus brief along with 42 other legal organizations supporting Talevski. “An adverse decision will have huge implications for government program beneficiaries and for holding governments accountable.”

Read the full article here

(or see last week's Newsletter, HERE)

In each of the three successive group homes in which he had lived, he had been either neglected or injured, Janice said.

Janice had to leave her career of 30 years in dentistry to care for her son at home. At first, it seemed like the right decision. But after five years, she felt she couldn’t continue to keep him at home due to the high level of care required. Yet she couldn’t find another safe or suitable residential placement for him.

“I felt that my own health and age were pressing down on me daily,” she said.

But while the appearance of the buildings on the Wrentham campus made her decision to place her son there a difficult one, she soon came to reassess her initial reaction. She said she realized that what goes on inside the buildings at Wrentham is more important than how they look on the outside.

“I no longer see it (Wrentham) as institutional,” Janice said. “I now see the love and devotion the staff gives my son.” She added that even though the buildings are old, her son’s unit is “immaculate.

The hallways, the bathrooms are spotless,” she added. While many modern nursing homes smell of urine, she said, that isn’t true at Wrentham. “They really work hard to keep it clean.”

For Janice, the decision by the Department of Developmental Services (DDS) to admit Jeremy on September 20 to Wrentham has opened new and positive possibilities for both him and herself. It was a rare new admission to one of the two remaining developmental centers in the state.

“I’m so grateful that we have now found a real home for Jeremy,” Janice said. “My son deserves a home and family that will serve him after I am gone. This is the first time he has been treated with respect and dignity outside my care.”

Janice added that, “I see placing Jeremy here as an act of love for him. I want to love and support him through this transition, which I’ve made by choice and not due to an emergency.”

Continued

New Mexico - Labor Shortage Putting People with Developmental Disabilities at Risk

By Suzanne Potter, Public News Service, October 14, 2022

Come next year, people with developmental disabilities in New Mexico may not be able to find the help they need - because of a severe labor shortage in the field.

Agencies are struggling to find workers to staff group homes, help with daily living, help clients find jobs, and more.

Jim Copeland, executive director of the Association of Developmental Disability Community Providers in New Mexico, said the state needs to increase the amount it reimburses providers - so the agencies can pay workers more per hour - and thus attract and retain more employees.

"The citizens of New Mexico have made a commitment to families and individuals with intellectual and developmental disabilities," said Copeland, "to provide the necessary supports to allow them to live their best lives. And I think we have to live up to that commitment, whatever the cost."

And the pressure on the industry is about to get worse. The feds raised reimbursement rates during COVID through the American Rescue Plan, but rates are expected to fall once the public health emergency ends.

At the same time, the state of New Mexico has vowed to provide services for all 4,200 people on the developmental disability waiver waitlist by next spring - so they are bracing for a flood of new clients.

Copeland said developmental disability services have been underfunded for decades. Providers are asking the state for almost $18 million in the next budget - a 17% increase.

Otherwise, he said, more providers will reduce services or close.

Continued

Vermonters with Disabilities and their Families Demand a Safer System of Care

Opinion by Rev. Mike Gruteke, Chair, VT DD Council, VT Digger, October 9, 2022

Recent reports in the media have drawn attention to the issue of abuse, assault and neglect of people with a disability.

Protection of all people with disabilities from mistreatment is a core concept of public policy in the United States. Any abuse of a person with a disability is wholly unacceptable.

The current allegations should not be dismissed as an isolated incident involving a few bad actors. They should also not be over-generalized. The vast majority of Vermonters who participate in home-sharing programs provide high-quality care. Rather, these recent incidents need to be seen for the systems issues that they reveal. 

Vermonters with developmental disabilities need a system of care with enough resources to regularly inspect settings where people are receiving services live. Developmental Disabilities Services has seen a reduction in quality oversight activities, a trend that must be reversed.

Our recommendations include:

• Training: All people with intellectual or developmental disabilities — and involved family members — should receive training, in plain language, about their right to be free of mistreatment and how to report suspected abuse.
• Inspections and oversight: Consistent with other long-term living facilities, such as skilled nursing facilities, annual inspections of provider-controlled residences, including shared living arrangements, must be the norm. Some of these inspections should be unannounced. 
• Livable wages: The state must raise the wages and stipends for the entire direct support workforce. These increases should be accompanied by higher expectations for training and oversight.

The tragic events in Franklin County need to be a catalyst for action.  

Link to article here

Abuse and neglect can occur in all types of settings, large or small, public or private. VOR advocates for high quality care and human rights for all people with I/DD and Autism, regardless of the setting.

Illinois - Chilling Audio Provides Rare Glimpse Into Abuse at Troubled Illinois Residential Facility

WSIU Public Radio | By Beth Hundsdorfer | Capitol News Illinois, Molly Parker | Lee Enterprises Midwest  ProPublica,   October 10, 2022

The disturbing 911 call began with sounds of a struggle, then a voice that sounded like a child’s cried out, “Let me go.” When the police dispatcher in the rural southern Illinois community announced herself, no one responded.

She heard other voices, laughing and taunting, then a female voice said, “You want me to break your other finger?”

There was shouting, and someone crying “Let me go” at least a dozen more times.

At one point the victim — who was later identified as a 22-year-old resident of the Choate Mental Health and Developmental Center — said “I don’t like you.”

“I don’t give a s***,” a woman responded.

Almost five minutes passed on the June 2020 call before the dispatcher got the attention of someone on the other end of the line. Then the connection went dead.

With the audio recording in hand, the Illinois State Police launched an investigation. They learned that the call was made as Choate employees attempted to restrain a patient: A smart watch jostled in the struggle had accidentally dialed emergency services. They discovered that the voice heard pleading for help belonged to Alijah Luellen, who has Prader-Willi syndrome, a genetic condition that can cause severe childhood obesity, intellectual disability and behavioral problems. They also discovered that the other voices belonged to the employees paid to care for him.

Nonetheless, such incriminating evidence was not enough to hold anyone accountable.

Such failures of accountability at Choate, which is run by the Illinois Department of Human Services, do not begin or end with the 911 call. Reporting by Lee Enterprises Midwest, Capitol News Illinois and ProPublica reveals a culture of cover-ups that makes it harder to reform the 270-bed developmental center for people with intellectual and developmental disabilities and mental illnesses. In dozens of cases, records show that Choate employees have lied to state police and to investigators with IDHS’ Office of the Inspector General; walked out of interviews, plotted to cover up or obfuscate alleged abuse and neglect; and failed to follow policies intended to protect the integrity of investigations.

The findings follow stories by the three news organizations last month that exposed abuses patients have suffered at Choate. In response to those articles, Illinois Gov. J.B. Pritzker issued a warning to state workers: Put an end to “awful” abuses or the state may be forced to shut the facility down.

IDHS did not dispute any of the news organizations’ findings, and it said in a statement that the agency requires employees to cooperate with OIG investigations and trains them on the need to be truthful with both the OIG and state police. Similarly, IDHS trains staff on preventing and reporting abuse and neglect on at least a yearly basis.

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 join.

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

[email protected]

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:

Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

H.R. 3089 & S. 1544- Accelerating Kids' Access to Care Act - This bill requires state Medicaid programs to establish a process through which qualifying out-of-state providers may enroll as participating providers without undergoing additional screening requirements. Among other things, a qualifying provider must (1) serve minors, or adults whose condition began as a minor; and (2) have previously been screened for Medicare participation or for participation in the Medicaid program of the state in which the provider is located.

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid programs.

H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.



VOR OPPOSES:

H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.

H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.

H.R. 2383 & S. 3238 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of these special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.

H.R.6860 & S.3417 - The Latonya Reeves Freedom Act - Supporters of this bill consider it to be the Disability Integration Act of the 117th Congress. The bill calls for the phasing out of intermediate care facilities for individuals with Intellectual Disabilities.

Families of Individuals with

Severe/Profound I/DD and Autism

Need a Voice in Washington, D.C.

For Four Decades, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we have engaged in over ninety meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. Just today, we met with leadership of the Administration for Community Living to discuss our mutual concerns and to offer paths forward to help serve all people with I/DD,

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom or WebEx. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

Please click here to join, renew your membership, or contribute to VOR