August 16, 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.

VOTING & You,

Voting & Your Loved Ones

VOR is a national non-profit, 501(c)(3) organization and endorses no party in the upcoming elections. We have members on both sides of the aisle, and many of our members fall somewhere outside of their party's platforms - agreeing on some issues while finding themselves at odds with their party's platform on others.

Our goal is not to tell you who to vote for, or against, but to encourage you to participate in this election.

We hope that our families will look carefully at the issues, the parties' platforms, and read from a wide range of news sources to determine for themselves which issues matter to them and which candidates best represent their views.

But what about our loved ones with I/DD and autism? Some of them do have the capacity to vote for the issues important to them. Others may not. We aren't sure what qualifies one person with ID/A or disqualifies another. There are no guidelines here, so it appears to be up to the parents or guardians to make such a determination.

We encourage our families to consider these issues.:

• What is the cut-off date for registering your loved one to vote?
• What methods of voting does your state offer?
• What are the rights of people with intellectual disabilities to vote in your state?
• What are the rights of people in long-term care facilities to vote?
• What caregiver assistance is allowed?
• Can your loved one file an absentee ballot?
• If they do vote with an absentee ballot, who is helping them to do so?
• What are your thoughts regarding whether or not to register your loved ones. Do you feel they are capable of making an informed choice on issues that will affect their well-being?

Several of our members have brought up these issues, especially their concerns that they don't want the providers or caregivers at a facility to be steering the ballots for all of their residents toward their own choices in this election. So we do ask our families to consider these issues.

And please remember, we are not the only I/DD / autism group encouraging their members to participate in the election. There are several self-advocacy organizations encouraging their members to vote, and making it very clear which issues concern them.

So check into voting rights for your loved ones in your state.

United Nations Committee on the Rights of Persons with Disabilities Opens Thirty-First Session

The Committee on the Rights of Persons with Disabilities today opened its thirty-first session on July 12, 2024.

In June 2024, the United Nations released the 2024 report on disability and development. The report showed that persons with disabilities were being left behind. Progress for persons with disabilities on only 30 per cent of Sustainable Development Goal targets was insufficient; 14 per cent of the targets had been missed or progress had stalled or gone into reverse. These included targets on access to financial resources, health care, water and information technology as well as on building resilience of persons with disabilities during disasters and other emergencies. Merely five indicators were on track: indicators on education, laws on equal access, disaster early warning in accessible formats, online services for persons with disabilities, government ministries accessible for persons with disabilities, and bilateral aid dedicated to disability inclusion. Wide gaps persisted between persons with and without disabilities, but for women with disabilities, indigenous persons with disabilities, persons with intellectual or psychosocial disabilities, and persons with disabilities living in rural areas, the gaps were even wider. Moreover, although countries had increasingly involved persons with disabilities in decision-making processes, overall, their involvement remained low.

Click here to read the full press release

Click here to download the UN Flagship Report on Diability and Development 2024

As Deadline Looms, Congress Weighs Future Of Autism Act

By Michelle Diament, Disability Scoop, August 12, 2024

With the nation’s primary autism law set to expire, federal lawmakers are inching forward on renewing roughly $2 billion in spending on the developmental disability, but leaving little time to spare.

Activities funded under the measure known as the Autism Collaboration, Accountability, Research, Education and Support, or Autism CARES, Act will come to an end if the law is not extended by Sept. 30.

The measure, which originated in 2006, allocates federal dollars for research, prevalence tracking, screening, professional training and other government activities related to autism. The law was last passed in 2019.

So far this summer, the Autism CARES Act of 2024 has been approved by committees in the U.S. Senate and the House of Representatives, but it has yet to progress further in either chamber despite broad bipartisan support.

There are differences between the House and Senate bills, but both seek to increase funding to renew many existing autism-related programs for five years while also expanding the focus on issues related to aging among those on the spectrum and supporting people with limited speech or language. Each version also requires the National Institutes of Health to produce an annual budget plan for autism research, a change that advocates say could help ensure that federal investment keeps pace with the needs of the community.

“The House and Senate bills are different but not so different that they cannot be worked out in conference,” said Kim Musheno, vice president of public policy at the Autism Society of America. “There are provisions in each that are stronger or weaker, but both address the needs of those with autism across the lifespan.”

Other provisions in the proposals include a push for a more inclusive approach to autism research to ensure better representation of those who need 24-hour care, for example, as well as calls for a government report looking at how to increase the number of developmental behavioral pediatricians and a separate study examining the challenges of young adults with autism transitioning to adulthood.

Read the full article here

Census Rethinking How To Count Disability Population

By Michelle Diament, Disability Scoop, August 15, 2024

After facing an uproar for trying to change the way it counts the number of Americans with disabilities, the U.S. Census Bureau will meet with advocates concerned about the potential for a severe undercount.

Officials with the Census Bureau said they will convene with disability stakeholders Sept. 30 to “better understand challenges in data availability and access for their community.”

The meeting comes after the Census Bureau proposed major modifications last year to its disability questions as part of an update to the American Community Survey. Officials backed off the plan after receiving over 12,000 comments, many of which were critical.

The meeting is being hosted by the Census Bureau along with the Office of Management and Budget, the National Center for Health Statistics, the National Council on Disability, The Leadership Conference Education Fund and the Consortium for Constituents with Disabilities’ Health Task Force, Census officials said. It will include federal representatives, data users, disability advocates and other members of the community.

With the proposal issued last fall, officials sought to reorder and reword the series of six disability questions while adding a new question about psychosocial and cognitive disability and problems with speech. Under the plan, people would be asked to rate the level of difficulty they have with various functions rather than simply responding with “yes” or “no.” Advocates said that in order to be counted as having a disability, a person would need to respond to at least one question with “a lot of difficulty” or “cannot do at all.”

Disability advocates had warned that the changes, which they said caught them by surprise, could lead to a 40% drop in the count for this population. That would have sweeping ramifications, they said, since Census Bureau data is used to inform decisions on federal funding allocations and many government programs.

Now, advocates say it’s important that the Census Bureau regularly engage with the disability community.

“It’s critical that our community and our experts inform the way the bureau approaches these revisions, and that they take seriously our concerns about how changes could impact the disability community,” said Zoe Gross, director of advocacy at the Autistic Self Advocacy Network. “There are important policy implications to how the government approaches counting and identifying people with disabilities, and our motto ‘nothing about us without us’ definitely applies here.”

Read the full article here

30% of LGBTQ Students Diagnosed With Disability, Twice the Rate as Kids Overall

By Beth Hawkins, The 74, August 12, 2024

New report finds this dual identity makes victimization in school and exclusion from activities even more pervasive

Three in 10 LGBTQ youth have at least one formal disability diagnosis, according to a new report from the Human Rights Campaign. This dual identity makes them uniquely vulnerable to in-school victimization and exclusion from activities and physical spaces, according to data compiled by the organization.

LGBTQ teens are twice as likely as the overall student population to have a medically documented disability. Three-fourths of the disabled LGBTQ students researchers surveyed have a mental health diagnosis, such as depression or anxiety, and nearly 60% have a neurodevelopmental disability such as autism. One-fourth have a physical disability. More than half have more than one diagnosis.  

Nearly two thirds — 62.5% — reported physical or verbal harassment in the month before the survey. Half were made fun of, while 1 in 10 were hit or pushed by other students, according to the report.

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Colin Farrell Opens Up About Son With Angelman Syndrome: “I Want the World to Treat Him With Kindness”

By Carly Thomas, The Hollywood Reporter, August 9, 2024

Colin Farrell is opening up about his son with Angelman syndrome publicly for the first time, as well as revealed he’s launching a foundation to support people with intellectual disabilities.

In a recent interview with People magazine, the Oscar-nominated actor shared that his son James, who turns 21 in September, was diagnosed with the rare neurogenetic disorder at two and a half years old. He’s now speaking out to shed some light on his son’s condition and the fact that James, among others, will age out of many support systems for families with children who have special needs after their 21st birthday.  

“Once your child turns 21, they’re kind of on their own,” Farrell explained. “All the safeguards that are put in place, special ed classes, that all goes away, so you’re left with a young adult who should be an integrated part of our modern society and more often than not is left behind.”

The actor also noted that the “only reason” he’s publicly talking about this now is because he “can’t ask James if he wants to do this,” as his son is nonverbal.

“I mean, I can. I speak to James as if he’s 20 and has perfect fluency with the English language and age-appropriate cognitive ability,” he said. “But I can’t discern a particular answer from him as to whether he’s comfortable with all this or not, so I have to make a call based on knowing James’s spirit and what kind of young man he is and the goodness that he has in his heart.”\

Farrell is so proud of how hard James has worked “all his life,” which is one of the many reasons why the actor is launching the Colin Farrell Foundation. It will help bridge that gap and provide support for adult children who have intellectual disabilities through advocacy, education and innovative programs.

Read the full article here

Massachusetts - The system is failing young adults with autism after they turn 22, families say

By Meghan Smith, WGBH News, August 15, 2024

On a recent afternoon in Lexington, Aloke Roy and his parents watched as a dancer, adorned with gold jewelry, performed bharatanatyam, a classical South Indian dance. Aloke, 23, likes to attend these shows any chance he can, where he is captivated by the bright colors and storytelling through dance.

Aloke has severe autism and several developmental disabilities. His mom, Mona, says experiences like the bharatanatyam performance are important for him because he has regressed in the past year. Since he turned 22 and aged out of his school, he has lived in a group home nearby in Burlington. His mom says he lost progress he made and has developed challenging new behaviors.

“He desperately needed school,” she said. “And now he just doesn’t have it.”

In Massachusetts, young people with autism rely on their public school district for academics, vocational training, job readiness and life skills training. But after they turn 22, school support ends, and those who need high levels of support start to rely on state services. Advocates say there aren’t enough workers for the state’s group homes and day programs, and as a result, the system is failing young adults like Aloke. That puts a major strain on families and caregivers, who are faced with long waits for fewer options. Some decide the best approach is to fill the gap themselves, quitting jobs to stay home or paying out of pocket for service workers.

“Aloke’s story is emblematic of so many kids, where they don’t get the support they need to be able to function in the real world,” Mona said. “He fell off a cliff.”

Maura Sullivan, recently named CEO of The Arc of Massachusetts, knows the challenge well, both as an advocate and a parent: She has two sons with autism, one of whom just aged out of school.

“When they turn 22, the school system funding goes away. And that’s why we often refer to this as ‘the cliff,’ where you step off into funding that’s really based on the adult services safety net,” Sullivan said.

Sullivan says state leaders have been supportive in recent years but the real problem now is the workforce shortage. Advocates say that following the pandemic, the low pay for human service workers has led to staff leaving for higher-paying jobs in other fields, leaving thousands of adults with autism and other developmental disabilities without the help they need every day. Day programs, located in towns throughout the state, provide adults with individualized daily support as well as activities and training on independent living skills and, if needed, behavioral therapy.

The number of young adults needing services has increased, Sullivan says. She estimates that in the coming year about 1,500 students with severe autism and intellectual or developmental disabilities will leave the school system and seek adult services through the state. Just a decade ago, that number was around 700.

The state is working to address the worker challenge. They have invested in care programs, increased pay rates — up to around $20 an hour from $16 — and set up outreach programs to recruit more workers. But advocates like Sullivan say it’s still not enough to recruit and retain workers as the cost of living increases.

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Georgia caregivers for people with disabilities will soon see boosted paychecks 

By Katherine Landegan, The Atlanta Journal-Constitution, August 15, 2024

Georgia will soon increase wages for thousands of caregivers who help people with disabilities as state officials try to slow a worker exodus that is eroding services for this vulnerable population.

For years, organizations that serve Georgians with intellectual and developmental disabilities have said low wages, which are paid for with public funds, have resulted in a diminished workforce of caregivers. The COVID-19 pandemic pushed even more workers to leave, and group homes and other organizations struggled to compete with rising wages in the private sector.

In July, the state was given approval from the federal government to give a significant boost to caregiver wages. Caregivers, who are referred to as “Direct Support Professionals,” are now paid an average of $10.63 an hour through Medicaid, although organizations can pay above or below that rate. In the coming months, that average rate will go up to $16.70 an hour and the changes will enable organizations to offer other fringe benefits, like paid leave.

Kevin Tanner, commissioner for the Georgia Department of Behavioral Health and Developmental Disabilities, called the increase “historic.”

“This is way overdue,” Tanner said, adding, “It’s going to be a game changer for our providers, and in turn, a game changer for the people we serve in Georgia.”

The rate increase will cost the state $108 million annually, and the federal government will need to spend about an extra $200 million each year.

The change marks the first time in years the state has examined the rates for caregivers. The impact of these stagnant wages, outside of some modest supplements, has been severe: homes for people with disabilities have closed down, and organizations that have stayed open are operating with a skeleton staff. Caregivers previously told The Atlanta Journal-Constitution they have to string together other part-time or full-time jobs to pay their bills, and some reported working as much as 100 hours a week.

The increased rates will benefit approximately 20,000 caregivers in Georgia, according to state estimates, and state officials hope the wage increase will slow the high turnover rate in the profession.

Read the full article here

Minnesota long-term care workers could qualify for bonuses

By Gretchen Hjelmstad, Valley News Live, August 15, 2024

More than 200,000 long-term care workers may qualify for bonuses of up to $1,000 from the state of Minnesota.

Direct support professionals are workers who support people with disabilities, aging Minnesotans and children with autism. They are sometimes known as personal care assistants, nursing home workers or other titles. Direct support professionals help people bathe, shower, get in or out of chairs, use the bathroom, eat and perform other daily activities.

With $84 million approved in 2023, the Minnesota Care Force Incentive program aims to recognize the essential work of direct support professionals. Funds will go to organizations that will pay bonuses to eligible employees in early 2025.

“These payments recognize our direct support workforce and how much we value their work,” said Human Services Commissioner Jodi Harpstead. “We’re grateful the Legislature and Governor Tim Walz created this fund to help address one of our major workforce challenges.”

Employers may submit applications for the Minnesota Care Force Incentive program between Aug. 15 and Sept. 30. The Minnesota Department of Human Services will contact provider organizations that qualify later this year.

Exact amounts of individual bonuses will depend on how many applications the state receives. The bonuses could be as high as $1,000 per direct support professional.

For more information, please click here

California - Gov. Newsom must invest in disability services now or the consequences will be dire (Opinion)

By Olivia Vain, the Fresno Bee, August 14, 2024

Barring a tragedy, parents are not meant to outlive their children. So when children grow up with autism or other developmental disabilities and must depend on their parents to meet basic needs as adults, their needs become a complicated challenge that have implications throughout the state.

Is California prepared to deal with this looming reality from an economic standpoint?

While disability service providers throughout the state provide critical support, it is an industry that has long been at risk due to inadequate pay — and, consequently, an inability to attract and retain quality staff.

Gov. Gavin Newsom has proposed to delay the long-anticipated rate increase for disability service providers until January of 2025. This delay will further exacerbate the growing wage gap for service providers.

The state must prioritize the care of disabled adults through adequately funding disability services — or pay the consequences of inaction later, as these adults will face homelessness, unemployment, poverty and institutionalization in the absence of quality long-term and suitable care.

Across California and the nation, rates of autism are increasing; this rising rate of diagnoses intersects with the “Silver Tsunami” Baby Boomer generation and a national staffing shortage.

In 2022-23, there were an average of 16,250 new regional center consumers with autism in California, and the number of people in need of services is increasing. A staggering 99% of new consumers in 2023 had autism. Roughly 65% of adults living with developmental disabilities in California still live with their parents.

It’s simply not feasible for aging parents to handle the care-giving needs of autistic and developmentally disabled adults. But there is a pathway forward that we can build on.

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New York - Guest editorial: "We must do better for children and adults with disabilities"

By State Senator Pam Helming, The Finger Lakes Times, August 14, 2024

Like so many other businesses, organizations that provide services to people with intellectual and developmental delays or disabilities are having a tough time finding and keeping qualified employees.

A serious shortage of direct-support professionals, teachers, and clinicians means long waiting lists for essential services like medical and dental appointments, housing, and day treatment programs, as well as the loss of social and recreational opportunities. High turnover rates for direct support staff are costing provider agencies thousands of dollars each year, making it difficult to continue crucial services.

The struggle to retain direct-care professionals is not new. In the 1980s, I worked as a residential manager at a group home serving adults with developmental disabilities. It was hard to find and keep qualified staff. Low pay then and now remains the biggest issue. State and federal governments must work together to make meaningful changes to the reimbursement rates these agencies receive, or the situation will only get worse.

According to a Commonwealth Fund report, the direct-care sector in the United States is expected to add over 1 million new jobs by 2031, more than any other occupation. But where will we find the people to fill these positions?

In New York State, organizations providing these services hoped 2024 would be the year that included adequate reimbursement rates to cover inflation and years of underfunding, that pay for direct-care professionals could finally be raised. While our current state budget takes some important steps toward addressing the underfunding issue, it falls short of properly investing in programs serving our most vulnerable citizens. As a result, organizations like Ability Partners (CP Rochester, Happiness House, and Rochester Rehabilitation Center) continue to struggle.

For example, Ability Partners has preschool classrooms that can’t open because of difficulties retaining qualified teachers, paraprofessional staff, and clinicians. This has led to wait lists for physical, occupational, and speech therapy, as well as behavioral services. This delays the assistance some children and young adults need to reach their full potential.

Studies have shown early intervention can lead to improved developmental outcomes, increased academic success, enhanced social skills, and decreased need for special education services. Preventive and skilled services are crucial to avoid much more costly acute and long-term care needs.

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New York- Hochul won't rule out delaying, changing CDPAP cuts

By Kate Lisa, NY State of Politics, August 12, 2024

Gov. Kathy Hochul on Monday would not rule out changing, or delaying, planned cuts to a Medicaid program that helps disabled and elderly New Yorkers remain in their homes. 

New York's Consumer Directed Personal Assistance Program is scheduled to transition to one fiscal intermediary down from nearly 700. The state Health Department is slated to award a five-year, multi-billion dollar contract with a company by Oct. 1.

But new responses from the department about its bid process lacked basic information about the current program. DOH would not provide the number of FIs or home care workers under the program, or how many New Yorkers it serves. 

Hochul said the $9 billion Medicaid program is unsustainable, but told reporters Monday she's open to more than one FI as the state works to meet the upcoming deadline.

"The Oct. 1 deadline, we're trying to meet this — trying to right-size this program," Hochul said at an unrelated event in Buffalo. "One [fiscal intermediary] may not be the number, but 700 sounds like an abuse of the program, and in fact, I believe it is. So we're still working this out."

Hochul said the nearly 700 fiscal intermediaries that manage CDPAP take a significant cut of taxpayer dollars, and the program has seen rampant abuse.

DOH is accepting bids, and a company does not have to have an existing presence or experience with New York's Medicaid system to be eligible.

DOH would not answer questions about why the department did not release more specific CDPAP data.

The contract is not subject to approval by the state comptroller's office — oversight the governor and Legislature agreed to remove as part of the final budget deal. Hochul insisted on the cut to rein in the state’s $100 billion Medicaid program ahead of next year's expected $4 billion spending gap.

The department's responses have prompted questions from concerned families and caregivers about how New York could implement the cut without interrupting care, or forcing disabled and elderly people into adult-care facilities.

"This change was such last-minute, under-the-radar and not involving the people that it actually effects," said Lolli Edinger, a CDPAP home care worker in Ulster County. "And it feels almost like there's a grudge against us."

State and federal lawmakers on both sides of the aisle have come out against the planned change to CDPAP, which serves about 250,000 New Yorkers.

Several New York Republicans in Congress sent the U.S. Center for Medicare & Medicaid Services a letter Aug. 5 about potential consequences of the cut, and requested the department to intervene and stop the change to New York's program before it happens.

"When the governor on the one hand says how much she cares, and then on the other hand, does something that is clearly careless, and frankly will ultimately neither benefit them financially nor importantly help individuals with disabilities," said U.S. Rep. Marc Molinaro, R-19. It's just unfortunate.

Other sates like Massachusetts and Pennsylvania placed their CDPAP programs under one company after years of mismanagement with several providers. Years later, some home care workers in those states continue to see delays in pay, causing interruptions in care.

Home care advocates in New York argue other states studied how to make the change for at least a year, or much longer than New York, and fear worse outcomes in a larger state.

Read the full article here, including the letter submitted by Rep. Marc Molinaro and other NYS Republican members of Congress

Maine - 'It's a real crisis': Treatment programs for kids with disabilities are disappearing

By Katie Delaney, News Center Maine, August 14, 2024

There are now only two residential treatment programs for kids with intellectual and developmental disabilities covered by MaineCare left in the state, leaving few options for many kids who are struggling and their families.

In the past two months, three Spurwink residential treatment programs have closed—two in Chelsea and one in Scarborough. Now, only Spurwink’s Brook House in Westbrook and KidsPeace in Ellsworth remain.

According to behavioral health professions, more than 100 kids in Maine are waiting to be placed in residential treatment programs, but they don’t have anywhere to go.

There are about 224 residential beds in Maine and 121 kids currently placed. But most facilities don’t have the staff or resources to take on any more kids.

“We wish that we could take them all in to provide them the support,” Rachel Bousquet, executive director of KidsPeace in Ellsworth, said.

But staffing shortages and rising costs make it impossible.

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Pennsylvania - Editorial: In disability care, Shapiro fulfills a promise. But there's more work to do   

By the Editorial Board of the Pittsburgh Post-Gazette, August 9, 2024

This year’s budget negotiations resulted in significant — and long overdue — progress for Pennsylvanians with intellectual disabilities and autism (ID/A). While there’s still more work to do, Gov. Josh Shapiro delivered more results for this often-forgotten community than any other state executive in recent memory.

The budget makes significant investments to finally eliminate, over the course of several years, the state’s emergency waitlist for services. But there were casualties in the budgeting process, and these cuts to other parts of the ID/A budget will make achieving long-term stability more difficult.

The funds to eliminate the waitlist — for services the state is legally obligated to provide — will be disbursed over the next five years, eventually addressing the statewide 6,000-person emergency list. The first pool of $74.8 million will immediately provide support waivers for 1,500 people. These waivers pay for services like speech therapy, specialty transportation, in-home care and employment assistance.

But providing this care will hinge on addressing a larger issue: Recruiting, hiring and retaining enough staff to administer the specialty care people with ID/A need. Known as direct support professionals (DSPs), they do the challenging and intimate work of caring, around the clock, for people who require professional help to thrive.

For years, DSP wages, currently reimbursed by the state at less than $17 an hour, have been too low to attract and retain talent. As a result, even when families receive waivers, care isn’t guaranteed. Without enough DSPs, families will just find themselves in a different portion of the same pipeline, still waiting or receiving only some of the services they need.

Mr. Shapiro has made some headway improving DSP wages, allocating another combined $280 million in state and federal funds to boost reimbursement rates. This will raise wages by 7% – not the 12% originally promised, but a welcome step nonetheless.

But there are other ways to address abysmal DSP wages: HB661, introduced by House Majority Whip Dan Miller, D-Mt. Lebanon, would tie reimbursement rates to market conditions including inflation, automatically adjusting them each year. Currently, reimbursement rates are updated in a convoluted process only every three years.

HB661 would fully liberate DSP wages from Harrisburg’s yearly budget battles, and guarantee fairer wages moving forward — but the bill has been languishing in a Human Services subcommittee for over a year. In tandem with Mr. Shapiro’s budget investment, HB661 would ensure that families on the emergency waitlist actually receive their approved professional care.

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Ohio bill allowing care facility cameras now ‘worthless,’ advocates say

Ava Boldizar, WCMH Fox8 News, August 9, 2024

A bill named after a woman with developmental disabilities who had her throat slit at an Ohio care facility has been amended by legislators, with disability advocates calling the new version “worthless.”

House Bill 465, known as Lauren’s Law, was introduced in the Ohio House in March. If passed, Lauren’s Law would have forced facilities for the developmentally disabled to allow cameras in resident’s rooms at their request or the request of their guardian or attorney. Through the Medicaid Waiver Program, it would have also paid family members who want to care for their loved ones at home nearly the same as those who work in intermediate care facilities. 

Lauren’s Law was named after a 36-year-old woman with developmental disabilities. During the three decades she has lived at intermediate care facilities, her father Greg Carter said she has been repeatedly abused and neglected – including having her throat slashed, resulting in a 4×1 1/2-inch cut that required 12 sutures to close. No one was held legally responsible.

Legislators in the House Families and Aging Committee amended the bill at the end of June, with the current version stating families may place cameras in their loved one’s room “if the facility permits electronic monitoring.” Lindsey Sodano is an advocate for parent caregivers in Ohio and the mother of a child with developmental disabilities. She stated she was disappointed to see the bill weakened to the point of being “useless.”

“They changed it where it’s not the family’s choice anymore, it’s the facilities choice,” Sodano said. “If you were the facility, wouldn’t you just say no? So it doesn’t really do anything.”

Carter said he has concerns not only that the amended bill is “worthless,” but that it would actually codify that camera permissions are at the whim of facility companies. He stated he does not want his daughter’s name “anywhere near” the amended bill and that he will actively oppose it. 

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[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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