August 25, 2023

VOR's Weekly News Update

Why ICFs Matter

September 21, 2023

7 pm Eastern / 6 pm Central / 5 pm Mountain / 4 pm Pacific

On Zoom

Join us for our next Quarterly Networking Meeting, when we present a forum on the importance of Intermediate Care Facilities to a full continuum of care for people with intellectual and developmental disabilities and autism.

Our panel will be moderated by Roslyn Leahey, and will feature VOR Board Members Rita Winkeler (Murray Center, Illinois), Sybil Finken (Glewood Resource Center, Iowa), Terry Lafleur (Pinecrest Center, Louisiana) and Joanne St. Amand (Greenbrook Developmental Center, New Jersey),

We look forward to hearing from you about the importance of ICF care for your loved one with I/DD or severe autism.

A link to the Zoom meeting will be available soon. Stay tuned.

Families, States Chart Path Forward on Paid Caregiving

End of the COVID-19 public health emergency has many states revisiting waivers that allowed payments to disabled Americans’ parents, relatives

By Jessie Hellman, Roll Call, August 21, 2023

For Paige Hall, a single mother living in Eugene, Ore., getting paid by Medicaid to care for her son James during the pandemic was life-changing. She no longer had to worry about finding a reliable, qualified caregiver who could care for James, a nonspeaking 11-year-old with autism and severe drug-resistant epilepsy.

Shortages of home care workers in Eugene had made it nearly impossible for Hall to find help, and the workers who said they were available either didn’t show up to work or were late to their shifts. But with Paige as James’ primary caregiver, his behavior, self-confidence and physical health improved, she said. 

“It was really amazing to see how well my son grew in those two years with myself as the caregiver.”

But Hall’s $24-an-hour payments ended May 11 with the expiration of the declared public health emergency due to COVID-19.

During the declared emergency, federal and state governments were permitted to temporarily waive laws preventing Medicaid payments to “legally responsible individuals” — namely, parents of minor children and spouses providing personal care services like bathing, dressing and feeding to their disabled relatives. 

The change has left thousands of families throughout the country navigating questions and uncertainty as states debate how to move forward, with families hoping for permanent programs that pay them to care for their children and spouses — especially as shortages of direct care workers continue. 

Hall has been unable to work because she has to care for her son full time and can’t find a suitable caregiver. Having a permanent program in Oregon "would mean stability — a more stable and positive environment for my son to grow in," she said. 

"I myself wouldn't have to stress and worry about whether or not he's going to have good, consistent and reliable care," she said. "I know that I can provide that.”

Oregon was one of 39 states that expanded the circumstances in which legally responsible individuals could be paid for caregiving duties during the public health emergency, according to KFF, a health policy research organization. 

Of those states, 20 indicated to KFF that they plan to make those policies permanent in some capacity, though families worry about what the new programs will look like, with potential caps on paid hours and eligibility limits. In 2018, before the COVID-19 pandemic, only five states allowed parents or spouses to receive Medicaid payment for those services, according to KFF. 

“One of the big considerations for states is the fact that [in] the paid professional workforce, we’re seeing ongoing shortages. Families can help really supplement that workforce,” said Lindsey Browning, program director at National Association of Medicaid Directors.

States that want to continue paying caregivers through Medicaid must submit their proposals to the Centers for Medicare and Medicaid Services for approval by November to avoid gaps in payments to families, the agency told Medicaid directors in early August, although some states, like Oregon, have already ended their temporary programs. 

Several states, including Delaware, Louisiana and New Mexico, have already filed plans with CMS requesting permanent changes allowing parents of minors or spouses to receive payments from Medicaid. 

Others, such as Ohio, Arizona and Virginia, have released drafts and are soliciting input from the public, while states like Idaho, Iowa and Kansas have vowed to pursue permanent policies but have not released details or a timeline. 

In states such as Georgia and South Carolina, the programs will end. Several states, including Ohio, Virginia and Arizona, want to make their programs permanent but with limitations on the number of hours for which parents and spouses can receive payment.

Read the full article here

Lawmakers Call For Incentives To Broaden Access To ABLE Accounts

By Michelle Diament, Disability Scoop, August 25, 2023

A new proposal would offer up matching funds to encourage more people with disabilities to open special accounts that allow them to save money without jeopardizing eligibility for government benefits.

The federal government would offer a dollar-for-dollar match for new and existing ABLE accounts for people earning $28,000 or less each year under a bill recently introduced in the U.S. Senate. A similar measure has also been introduced in the House of Representatives.

ABLE accounts were established under a 2014 federal law and allow people with disabilities to save up to $100,000 without losing eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much is in the accounts.

Under the plan [known as the ABLE MATCH Act] matching funds would taper off for each dollar earned over $28,000 and the match would be limited to $2,000 per year. The figure would also be indexed for inflation and it would account for those who are married or considered a head of household.

As of June, 151,164 ABLE accounts were open nationwide with an average balance of $9,941, according to ISS Market Intelligence. Casey said that matching funds would help increase enrollment in the program while bolstering the financial situation of individuals with lower incomes.

To qualify for an ABLE account, individuals must have a disability that onset prior to age 26, but a recent change in federal law means that the age cap will rise to 46 starting in 2026. Funds saved in ABLE accounts can be used to pay for qualified disability expenses including education, health care, transportation and housing. Interest earned is tax-free.

Read the full article here

Texas - Families Now Have All Options for Care

By Rebecca Japko, The Eagle, August 24, 2023

Starting Sept. 1, parents and guardians of children and adults who need 24/7 direct supervision and neurobehavioral support will have the opportunity to petition the court directly for a civil commitment order for residential placement in a State Supported Living Center thanks to the passage of SB944. 

Federal law states that if a state plan includes the option of Intermediate Care Facilities in its “Medicaid State Plan,” the state must provide that all individuals making an application for medical assistance under the plan shall have the opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals.

Individuals seeking residential care, including their parents and guardians, should be "given the choice of either institutional or home and community-based services.” 

The U.S. Supreme Court’s decision in 1999's Olmstead v L.C. defined the American with Disabilities Act by requiring all services be administered in the most integrated setting appropriate to the needs of the individual.

Olmstead established that persons with an intellectual disability vary in how they are situated in the spectrum and recognized that some persons may need “institutional care from time to time” and “for others, no placement outside the institution may ever be appropriate.” 

Families now can choose from the full continuum of care offered by the state of Texas and select the one that best meets the needs of their family member.

Read the full article here

Link to text of SB944

Parents like Christopher and Heidi Seth are now fighting to protect the centers that remain and are asking the state to adjust rates now rather than waiting until the next legislative session and putting access at risk.

"Malaki was born at 30 weeks prematurity weighing 2 pounds, 2 ounces," Heidi said.  

Years later, doctors would diagnose Malaki with autism disorder, and immediately the family started applied behavioral analysis, also known as ABA therapy. In a matter of months his development soared.

"He's more open to talking to people when he first meets them, he is more likely to go up to a random kid at the playground and play with them," Heidi said. "It's been night and day," Christopher said.

In the last 2 years, centers across Colorado have been leaving in droves. The family's center, Hopebridge, closed their doors this month.

"It could take months for him to get comfortable with someone new," Christopher said.

The reason behind the closures is providers say Colorado's Medicaid reimbursement rates are not keeping up with inflation and other costs of business.

They began sounding the alarm just as the state's review committee was set to meet in July. Dr. J.J. Tomash, Director of BehaviorSpan in Aurora, told CBS then that Colorado is approaching a care crisis.

"If we have to wait another year there isn't going to be autism services in Denver anymore," he said.

The state's Joint Budget Committee will ultimately be tasked with approving an increase. 

The discussion by the review committee is to raise rates by roughly 20% to reach a 100% of the benchmark, which is an average of rates from 10 other states, adjusted for cost of living. If approved, it wouldn't take effect until next summer. 

Marc Williams, a spokesperson for the Colorado Department of Health Care Policy & Financing, says their analysis showed Colorado at 93% of the benchmark and were looking at an increase around 7% versus the 20% discussed by the committee and that providers believe is more accurate.

While the committee will make a recommendation for 2024-2025 rates, the HCPF can make changes before going to the budget committee in November. 

Read the full article here

Watch the video of this article on YouTube

The house has ramps, lifts and other accommodations for Alex, who has Down syndrome, depends on a wheelchair and has complex medical issues that leave him unable to do almost anything for himself. His family will get extra state funding to pay for nursing help, but his mom Susan Coll-Guedes still expects much of Alex’s daily care will fall on her and other family members.

While each case is unique, thousands of New Jersey families, like Alex’s, are stuck in a kind of limbo as they try to get adequate services for loved ones who have disabilities and have complex medical challenges. Some are waiting for a safe group-home option when such housing capacity is already stretched thin. Others need help providing care at home, something that can be hard to find given a growing national nursing shortage. And many are frustrated by government regulations and budget limitations that they say restrict their options for accessing care.

Tim Strubble, 21, spent three months in a New Brunswick hospital before he returned to his mom Deborah’s Sussex County home in June. Some days the single mother has help from a home nurse for up to 15 hours. Other days she has none, leaving her alone to clean, feed and care for Tim, who weighs 200 pounds and requires a wheelchair, feeding tube and ventilator to breathe. The state is working to find him a suitable group home, she said.

Bill Noll, a 65-year-old man with cerebral palsy and medical complications, largely lingers in bed at a nursing home in Hunterdon County, where he was sent after being hospitalized in April for a feeding-tube-related infection. His mom Sheila is working with the state to find an appropriate group home, now that doctors have decided the facility where he previously lived — and was happy — is no longer a safe option for him.

“I don’t expect him to dance in the street, but he had a life,” Sheila Noll said, recalling how Bill had enjoyed the books and programs at that group home and made friends. “He had what for him was a life.”

While much of the care is covered through Medicaid, the state and federally funded public health insurance plan, and some families have supplemental private insurance policies, parents describe a long list of sacrifices, including lost time with other family members and friends, lack of career advancement and limited options for self-care. Deborah Strubble said she slept downstairs on the couch for eight years near Tim’s hospital bed, worried she wouldn’t hear the alarms from his medical equipment if she was in her bedroom upstairs. When he was hospitalized in New Brunswick — a 90-minute drive from her home — she spent about $1,000 a month on parking, gas and food.

“So many of these families are just overwhelmed,” said Paul Aronsohn, the state ombudsman for people with disabilities and their families. “Like other families, there are the daily pressures and challenges you meet, but you also have to worry about and care for a child or adult with a disability. And even if you get through today’s challenge, you have another set of challenges tomorrow.”

“This takes a toll on them physically, emotionally, financially, dealing with so many challenges 24/7,” said Aronsohn, whose has a sister with serious disabilities. “We work with families who don’t have weekends or vacations.”

New Jersey’s Department of Human Services oversees the Division of Developmental Disabilities and the Medicaid program, which together shape much of the disability-services landscape; the department does not comment on individual cases.

Medicaid, funded by state and federal taxes, supports some 25,000 adults with disabilities in New Jersey, including more than 8,000 people in group homes or supervised apartments and some 14,000 in private residences, according to the department.

The state also operates five institutional residences for people with significant disabilities, which together house just over 1,000 people. But court challenges and changes in state and national policy mean these facilities are now seen as a last resort, if community-based options — largely group homes with a handful of residents and staff, or supervised apartment units — can’t safely support a person’s needs.

Continued

New York - Preventing Sexual Assault Against NY'ers with Developmental Disabilities

By Edwin J. Viera, Public News Service, August 21, 2023

Advocates for New Yorkers with disabilities are voicing concerns about cases of sexual assault against people with developmental disabilities.

Federal figures show sexual assault cases against this population rose 27% between 2017 and 2019 - and fewer people with disabilities report these incidents.

Sharon McLennon-Wier, Ph.D. - executive director of the Center for Independence of the Disabled New York (CIDNY) - noted that the crime might not be reported because the person is unaware of what happened, or could be non-verbal.

She said she thinks developmentally disabled people need health and sex education, as much as any other group of young people.

"There still should be some level of health education," said McLennon-Wier, "so that those students can get the same kind of information about appropriate touching, and understanding their bodies - making sure that they have good hygiene, understand how to go to the doctor for problems."

A variety of sex education programs are designed around a person's intellectual ability level.

McLennon-Wier said she would also like to see police officers better trained to help those with developmental disabilities feel more comfortable reporting an assault.

CIDNY believes there should be a legislative component to this issue, as well. States like Connecticut have laws helping protect people with disabilities from perpetrators.

McLennon-Wier described what she'd like to see from New York.

"If there is a sexual assault to this population that does get to the level of the police and investigation," said McLennon-Wier, "as a public, we should need to know about that, because this is someone's daughter or someone's son that is being victimized."

Continued

Massachusetts - COFAR Asking Federal and State Lawmakers to Save Wrentham and Hogan Intermediate Care Facilities

By Dave Kassel, COFAR Blog, August 24, 2023

We believe individuals with intellectual and developmental disabilities in Massachusetts have a right under federal law to care at the Wrentham and Hogan Intermediate Care Facilities (ICFs).

They also have a right to work opportunities in their day programs and other congregate care settings.

Those rights are under continued assault. (See here and here.)

As a result, we are contacting members of the Massachusetts delegation in Congress and key members of the state Legislature, and are asking them to relay information about those rights to policymakers at the federal and state levels.

It seems to us that most lawmakers and policymakers do not recognize the wide range of functioning and needs among people with intellectual and developmental disabilities, or the importance of giving this population a full continuum of choice. One size does not fit all.

The Massachusetts Department of Developmental Services (DDS) is allowing the state’s two remaining ICFs — the Wrentham Developmental Center and the Hogan Regional Center — to slowly die by attrition. We believe the eventual closures of these essential backstops for care of the state’s most profoundly disabled residents will be disastrous.

Continued

Indiana Lt. Gov. Crouch Urges Delay in Finalizing Proposed Autism Therapy Reimbursement Rate Cuts 

By Hannah Adamson, Fox 59 News, August 21, 2023

 Indiana Lieutenant Governor Suzanne Crouch sent a clear message to the FSSA about a proposed decrease in the average ABA therapy reimbursement rate last week.

In a letter to FSSA Secretary Dr. Daniel Rusyniak dated Aug. 18, Lt. Gov. Crouch said she is concerned if the proposed rate goes into effect, therapists and the kids they serve could face devastating consequences.

Crouch chairs a task force that works to improve the lives of nearly 100,000 Hoosiers who have Down Syndrome, Cerebral Palsy, or Autism. She said several providers have contacted her concerned the FSSA’s proposal is too steep a cut, and that she’d like to see legislators, providers, and impacted families all at the bargaining table.

“Let’s take the time to get this right,” Crouch said. “Let’s be sure that we take the time to be able to have those discussions; to be able to hear from the people that are affected by, you know, these services.”

Part of her letter to the FSSA secretary read in part: “…I am requesting you delay any further action to finalize the proposed rates until a thoughtful consensus can be reached…”

“I’m glad that she sent a letter,” State Rep. Craig Haggard said.

Haggard said his son received ABA therapy before Medicaid started covering it, and that if the FSSA’s proposed rate is approved, most families won’t be able to afford it.

“I would hate for families to be put in the position of having to choose, do I need to put food on the table or take care of our kids as far as this type of therapy,” Haggard said.

State Rep. Haggard said a standardized rate is needed, but that the proposed decrease from an average of $91 to $56 per hour is extreme.

Continued

Texas - Parent Worried about Dismantling of HISD's Autism Support Team

By Jason Miles, KHOU-11, August 21, 2023

Four-year-old twins Natalie and Sydney share most characteristics, including autism.

"One is moderate, one is severe,” their mother, Karel Lopez, said.

Lopez said the latter is especially challenging.

“Severe means they have a lot of behavioral issues, sometimes they’re non-verbal,” Lopez said.

The family lives next to Shadowbriar Elementary, where the twins get specialized attention. But now, there’s news of a shakeup.

"And we’re not happy,” Lopez said.

Multiple sources told us the Houston Independent School District was dismantling its autism support team within the special education department and that contract employees who, among other things help train teachers, would lose their jobs.

"Have they thought out the whole process?" Lopez said. "Do they know how it’s going to affect the special needs children?”

Lopez is active in the group Autism Moms of Houston while the statewide Autism Society of Texas also reacted, generally, to planned changes.

"People are always going to think the worst,” AST Executive Director Jacquie Benestante said.

She said kids with autism can fall through the cracks without adequate intervention.

"There’s multiple things going on and when you don’t have the right diagnosis and the right support, it just exacerbates all of the problems for everybody,” Benestante said.

Lopez said she's considering a shift for the sake of her twins without knowing exactly what lies ahead.

“We are considering moving from this district because of that,” Lopez said.

HISD said students with autism and other special needs would continue to be adequately served.

HISD Response:

We will provide support for all students with special education needs, including students with autism as part of the Unit Support Model. This model moves supports for special education needs from the central office and puts them within the divisions. The Unit model provides a Director of Special Education, two coordinators, and a manager assigned to a specific feeder pattern of schools within each Division. This model allows support to be closer to the assigned campuses and enables staff to provide more focused supports to a smaller number of schools.

All of these staff members remain on the District payroll. Staff members who held the title of Itinerant Teacher now have an opportunity to interview for the positions within the new structure. If placed in the Unit Structure, these itinerant teachers - whose job was to coach and support SLC teachers district-wide - will still provide support and coaching but to a much more defined group of campuses. Those who don’t take a position in the Unit Structure will be offered a special education position at campuses with special education vacancies.

Continued

Florida Sued over Medicaid Redeterminations

Three Floridians, including two children, filed a lawsuit against the state on Tuesday alleging it illegally cut their Medicaid coverage without proper notice.

By Rebecca Pifer, Healthcare Dive, August 23, 2023

Florida officials are being sued in the first legal challenge against a state for how it’s conducting Medicaid eligibility checks after a pandemic-era pause.

Three Floridians, including two children, filed a lawsuit against the state on Tuesday alleging it illegally cut their Medicaid coverage without proper notice or a pre-termination hearing.

The plaintiffs, which are being represented by two consumer advocacy groups, are asking the court to restore Medicaid coverage to those who lost benefits due to deficient termination notices, and to forbid the state from continuing redeterminations until it fixes the current notification process.

Florida has pursued one of the more aggressive redetermination plans compared with other states, removing more than 408,000 people from its Medicaid rolls to date, according to a KFF tracker. More than half of those who lost coverage in the state were removed from the safety-net program for procedural reasons such as paperwork errors, instead of actual ineligibility.

The Florida Health Justice Project and the National Health Law Program filed the suit on behalf of three Floridians in the U.S. District Court for the Middle District of Florida.

The suit, which seeks class action status, was filed against the state’s Agency for Health Care Administration and the Department of Children and Families.

It argues that Florida violated federal law by failing to sufficiently inform enrollees that their coverage was in danger of ending and not giving them information on how to appeal. The faulty notices resulted in beneficiaries losing coverage “without meaningful and adequate” notification, the lawsuit says.

“The Florida Agency for Health Care Administration and Department of Children and Families have known since 2018 that their notices are confusing, difficult to read, and fail to adequately explain the reasons someone is losing Medicaid,” said Sarah Grusin, senior attorney at the National Health Law Program, in a Tuesday statement. “Nevertheless, the State continues to use them.”

Continued

Read a related article from the Associated Press here

Protect Your Loved Ones from Medicaid Disenrollment

States have been removing people from their Medicaid roles in large numbers as the end of emergency provisions put in place during the height of the pandemic are set to expire. The Great Unwinding is continuing, and anyone who receives services through Medicaid may be at risk of losing their benefits for failing to file new paperwork with their state agency.

In some states, Medicaid recipients can check their eligibility status online.

VOR encourages its members to contact their state agencies to make sure that the proper forms have been filed, so not to lose coverage.

Arkansans Feel the Pressure as Clock Closes in on Medicaid Benefits

By Jessica Ranck, KARK News, August 21, 2023

Several Arkansans say they have been left to scramble as the state makes rollbacks on Medicaid coverage for the first time since the pandemic.

Earlier this year, Arkansas started unwinding Medicaid rolls following the ending of the public health emergency that started during the pandemic. So far, more than 219,000 Arkansans have been disenrolled from the program.

In a report from The Arkansas Department of Health Services, leaders say the disenrollment is necessary to keep the program fair and “protect Medicaid resources for those who truly need it.”

Reasons for disenrollment include failure to return the renewal form, an ineligible household income, and failure to meet program requirements.

“I’m so emotional, it’s upsetting, it’s heartbreaking,” Shonnie Druilhet said. Druilhet is an Army Veteran who says she has been on Medicaid for the last two decades.

“I was 24,” she said. “It got me where I couldn’t feel anything from the neck down at first.”

That lifeline, though, is about to be cut. “I mean, I’m panicking. I’m stressed,” Druilhet said.

Druilhet is one of more than 219,000 in the same boat as the state cuts back on the number of Medicaid recipients.

“The reason they gave me for my disconnection was because they said I didn’t turn in a bank statement from and old bank that doesn’t even exist,” Druilhet said.

Shonnie’s benefits end on August 31.

“I am on the phone every day,” she said. “If you look at my call log and how many times I’ve called these numbers.”

Read the full article here

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VOR SUPPORTS:

S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

H.R. 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.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.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.

S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.

VOR OPPOSES:

S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.

S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.

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.

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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