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VOR's Weekly News Update
VOR is a national non-profit organization
run by families of people with I/DD and autism
for families of people with I/DD and autism.
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VOR's 2024 Legislative Initiative
MAY 7 - 9, 2024
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Sen. Bob Casey and Representative Debbie Dingell Introduce Bills to Address Critical Long-Term Care Workforce Shortage
These two bills are significant in that Congress has failed to address this shortage head on and neither Casey nor Dingell have introduced bills that encompass both Home- and Community-Based Services and Intermediate Care Facilities for Individuals with Intellectual Disabilities.
VOR worked with Senate Disability Policy Director Michael Gamel-McCormick and with several other advocacy groups to ensure that the entire workforce was included equally in this bill. Earlier drafts favored HCBS over ICFs.
Notably, however, the bill does include an unrelated and unnecessary earmark, as both Casey and Dingell added the permanent re-authorization of the Money Follows the Person Rebalancing Act (MFP) to their bills. VOR will continue to try to remove this provision from the bill. If MFP is to be renewed, Congress should hold hearings to examine many of the shortcomings of this bill.
Read Senator Casey's press release here
Read Representative Dingell's press release here
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Related News
‘Something Has To Give’: Senate Committee Tackles Long-Term Care Worker Shortages
By Samantha Manning, CMG Washington News Bureau, via WFTV-9, April 16, 2024
Nicholas Smith has worked as a direct support professional (DSP) for more than 25 years. His role is to help people with intellectual disabilities in Pennsylvania for the organization SPIN.
“I believe that this is my calling,” Smith told our Washington News Bureau. “I’m proud. I love the work I do.”
But like so many other long-term care workers, Smith has felt the burden of the industry’s severe staff shortages.
“I am working 60 to 75 hours a work week. So, I give up time with family,” said Smith. “Something has to give though. Right now, you’re seeing across the nation shortages.”
Smith shared his experiences with members of the Senate Special Committee on Aging Tuesday as they looked into ways to tackle the long-term care worker crisis.
This week, Sen. Bob Casey (D-PA) introduced a bill that would invest new funding to help increase pay and benefits for long-term care workers. It’s called the Long-Term Care Workforce Support Act.
Casey’s office said the median hourly wage for all direct care professionals was $15.43 in 2022 and said one in eight live in poverty.
“We have to make these jobs more attractive. That means higher compensation for sure. It means better benefits and treating these individuals like the professionals that we would want taking care of our mother or our father,” Casey told our Washington News Bureau. “The federal government for too long, for generations now, has failed to invest in those workers. We’ve got to do it if we’re going to have the best long-term care in the world.”
But getting Republican support may not be easy. The GOP Ranking Member cautioned against too much federal government involvement.
“We need innovation at the state and local levels to meet this increased demand. We don’t need really a lot more from the federal government,” said Sen. Mike Braun (R-IN) during his opening remarks.
Braun said he instead supports a proposal that allows federal Pell grants to be used for high-quality, short-term job training, including for long-term care, and another measure that reviews grant programs for nurses with the goal of creating more pathways into the workforce.
Caregivers like Smith, meanwhile, say it’s essential for lawmakers to make helping the long-term care industry a priority.
Read the full article here
Watch the Senate Hearing on the Long-Term Care Workforce here
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Medicaid Officials Remove Barriers For Those With Disabilities
By Michelle Diament, Disability Scoop, April 18, 2024
With a new rule, federal officials say they are streamlining the Medicaid enrollment process in an effort to make it easier for people with disabilities to get coverage and keep it.
The Centers for Medicare & Medicaid Services finalized regulations this month simplifying the eligibility and enrollment processes for Medicaid and the Children’s Health Insurance Program.
Under the new rule, states must give individuals at least 15 days to provide additional information when they apply for coverage for the first time and 30 days to return paperwork for renewals. There is also a 90-day reconsideration period if coverage is terminated because beneficiaries fail to return information needed to determine re-eligibility.
In addition, states will no longer be allowed to conduct renewals any more than once every 12 months and they will be barred from requiring in-person interviews for people with disabilities, among other changes.
Since Medicaid is operated by states, there is considerable variation in how it’s administered. The regulations are intended to bring more consistency and ensure access to the program for those who are eligible.
“This historic rule will simplify the process for people who are eligible for our nation’s health care programs to maintain their connection to their health care providers,” said CMS Administrator Chiquita Brooks-LaSure. “It means less time and money spent on unnecessary processes and more effort dedicated to protecting vital coverage for eligible people.”
The rule comes at the urging of disability advocates who cited challenges faced by people with intellectual and developmental disabilities in accessing Medicaid.
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Survey: Nearly 1 in 4 People Dropped from Medicaid Remain Uninsured
ByKen Alltucker, The USA Today, April 15, 2024
A 2-year-old girl with cystic fibrosis is among the masses of Americans who lost Medicaid coverage after the pandemic. The Jacksonville, Florida, toddler needed the insurance to cover life-saving medication and doctor visits, according to a lawsuit brought by the girl's mother and others. Instead, when she got sick last year, her family settled for a costly emergency room visit.
The crisis described by the Florida family is playing out in communities across the U.S. For millions of Americans, the nation's pandemic-era expansion of Medicaid health insurance is coming to an end.
Some turned to options including an employer insurance plan or the Affordable Care Act. Others survived without insurance, avoided unaffordable doctor's visits and left prescriptions unfilled.
A new survey on the fallout from resumed checks on Medicaid eligibility found that nearly 1 in 4 people bumped from Medicaid coverage last year remain uninsured. Nearly half the people kicked out of the program ultimately qualified again, suggesting they shouldn't have been thrown out in the first place. And millions endured gaps in coverage that could have endangered their health.
The KFF survey found that 23% of Medicaid recipients disenrolled when states resumed eligibility checks last year still don't have health insurance. These individuals are more likely to struggle to pay for health care and delay medical appointments.
KFF's research shows that 20.1 million Medicaid recipients were disenrolled since the eligibility checks resumed a year ago. Another 43.6 million people had their coverage renewed, and 30.4 million are awaiting Medicaid renewals.
Most states should be done with the renewals by June, said Jennifer Tolbert, deputy director of KFF's program on Medicaid and the uninsured. She said the Centers for Medicare & Medicaid Services, the federal agency that oversees Medicaid, is expected to release an estimate on when states will complete these pandemic-era reviews soon.
Tolbert said it's possible many people were mistakenly kicked off Medicaid. This would explain why so many people who had been removed were soon added back to the public health insurance program. These removals had an impact, she said, because even temporarily losing coverage can harm people.
The survey found that 56% of people who lost Medicaid coverage had skipped or delayed medical care.
"This was a much bigger problem for people who were disenrolled (which) led to gaps in accessing needed care," Tolbert said.
Read the full article here
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If You Lie to this Disney Program, You Will Be Banned From the Parks for Life
By Kathleen Wong, The USA Today, April 15, 2024
Walt Disney World and Disneyland recently updated their policies for guests with disabilities, and those who lie and misuse the program will be banned for life.
The two resorts announced changes to their Disability Access Service (DAS) last week to keep up with the rapidly growing number of requests and continue to accommodate those who truly need it. Requests for DAS have tripled over the past five years.
As the most popular service, DAS helps those with disabilities and their families have an enjoyable experience at the parks.
The program is intended to assist a “small percentage” of “guests, who due to a developmental disability like autism or similar, are unable to wait in a conventional queue for an extended period of time,” according to the DAS website.
To qualify for DAS, Disney does not require any proof of disability or access needs.
However, if any of the statements a guest has made during the DAS enrollment process are found to be false, the guest will be “permanently barred from entering” Walt Disney World and Disneyland, the website said. Any Annual Passes, Magic Key passes, tickets or other park products will also be forfeited and not refunded.
Once enrolled, guests can go to an attraction, request a return time, and wait somewhere else until it’s time to redeem their return time.
To qualify and enroll in DAS, guests need to do a virtual video meeting with a specially trained cast member – previously, this was possible to do in-person – to “determine what services may be appropriate to support their visit to the theme parks, including DAS,” according to the website.
Read the full article here
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Autism Clinics Shutter As State Struggles To Shore Up Funding
By Nick Coltrain, The Denver Post via Disability Scoop, April 19, 2024
For the first time in years, Jay Ortengren has seen his 16-year-old son, Ethan, reach milestone after milestone as he lives with a severe form of autism.
Ortengren and his family uprooted their lives in search of the best treatment for Ethan after he was diagnosed as a young child. Finally, they seemed to find it when they moved to Jefferson County during the pandemic. At Seven Dimensions Behavioral Health, Ethan has benefited from true wrap-around services, with two-therapist teams helping him for 40 hours a week.
Ethan began hitting goals with his motor functions, social skills and sensory tolerances, his father said. His attention span grew from just one or two minutes to 30.
But the exodus of autism treatment clinics from Colorado in recent years has Ortengren worried that any progress might be fleeting.
Reimbursement rates under the state’s Medicaid program, or how much the state pays for treatments, continue to fall short of the cost of business, advocates say, raising worries the industry could soon fall into a spiral it can’t escape.
A recent boost in funding has helped, though Ortengren still frets that the state support that’s meant so much for his son will dry up.
Ethan’s progress, and the level of treatment he qualified for in Colorado, were enough that Ortengren was able to start working full time again.
“If you were to take (services) away tomorrow, Ethan would backslide and he would suffer, and the family would suffer,” said Ortengren, whose family moved to Colorado from Virginia.
Since 2021, at least 13 companies — operating about 35 clinics of different sizes — have closed or left the state over reimbursement rates that
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haven’t kept up with rising costs, according to research by the Colorado Association for Behavior Analysis. Those closures have affected treatment for some 1,380 patients, and an estimated 1,000 Coloradans lost their jobs, according to the group.
“Colorado is relatively unique in the Medicaid
landscape right now because of the number of programs that have closed and/or exited the state,” said Mariel Cremonie-Fernandez, the vice president of government affairs for the national Council of Autism Service Providers.
To stanch the flow, Colorado lawmakers boosted funding for those types of programs by about $10 million, including federal matching dollars, through a midyear budget adjustment in February.
“When you lose those providers, it’s not something that can just come back online easily,” said state Sen. Rachel Zenzinger, an Arvada Democrat and member of the Joint Budget Committee. “Once they’re gone, they’re pretty much gone. … We’re trying to send a signal to hold on.”
Treatment for autism can be a time-sensitive affair, Zenzinger said, and better treatment early on can help set children up to reach their full potential.
But missing that critical window means setting them up for “a lifetime of disadvantage.”
Read the full article here
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West Virginia - Families Push for IDD Waiver Fix During Rally at State Capitol
By Carrie Hodousek, Metro Mews, April 14, 2024
Families for the Intellectual and Developmental Disabilities (IDD) waiver in West Virginia say they hope lawmakers will revisit a 10 percent cut to the program that was approved during this year’s regular 60-day session.
A rally was held outside the House of Delegates Chamber Sunday afternoon as lawmakers met for the first day of interim committee meetings.
Kanawha County parent Tracy White, who led Sunday’s rally, is pushing for a state budget fix.
White’s son has been enrolled in the IDD waiver program through the state Department of Human Services (DHS). It provides services to families and caregivers that help to teach, train and support their loved ones so they can reach the highest level of independence possible in their lives.
“Our youngest son is on waiver and if these programs are cut, individuals like my son and a lot of the other families here are going to have to make some tough decisions. Those decisions could be putting them in ISS (Institutional Shareholder Services) settings instead of living in their homes that they’ve done so their entire lives,” White said.
Families can begin applying to the program once a child turns 3; however, advocates said cuts to the program could mean longer wait times for those on the IDD list.
Darla Irvin is bound to a wheelchair. She said the cuts will negatively impact her way of living.
“Without the waiver, I will not be able to live on my own because I can’t have the supports I need to get dressed and to go out into the community or do anything so please don’t cut our lifeline,” Irvin said.
Cabell County parent Christy Black’s 20-year-old daughter Gracie, who has down syndrome, has relied on IDD since she was 5-years-old.
“IDD waiver is a life line. It’s critical for my daughter and it’s critical for my family,” she said. “While we are tired, we will never be too tired to fight for our family members.”
Black said her biggest concern is what will happen after she’s no longer alive and able to care for her daughter.
“The waiver provides services and support along with supports that we put in place that will allow her to stay in our home when we’re gone. The waiver allows her to have supports that she can be a working, tax-paying citizen,” she said.
Jackson County parent Trina Clark echoed those concerns and said she wants to see wage increases for at-home respite care workers.
“The program as a whole needs to be looked at from DHHR’s level of why aren’t services being provided? It’s because the people aren’t there to do the work,” she said. “We need the money to entice people to come and want to do the work.”
Clark has a 16-year-old son and 13-year-old daughter who each have an unspecified genetic disorder. They have required full care since they were infants.
“They function mentally at about an 18-month-old level. It’s all daily living activities: feeding, diapering, they’re both in wheelchairs and they’re non-verbal, so it’s a lot on a daily basis,” she said.
About $108 million was set to go toward the IDD waiver program, but in the final hours of this year’s regular session, the budget for IDD and other Medicaid programs were cut by 10 percent. The waiver program comes with a three-to-one federal match. It would be an $11 million cut at the state level and a $33 million cut at the federal level.
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Related News
West Virginia - Lawmakers try to sort out why State Didn’t Spend Millions Earmarked for People with Disabilities
By Amelia Ferrell Knisely, News From the States, April 16, 2024
State lawmakers tried on Monday to understand why the Department of Human Services left millions of dollars unspent that were supposed to provide services for people with disabilities.
A DOHS report showed that in fiscal year 2023, around $29 million dollars went unused. The department, previously known as the West Virginia Department of Health and Human Resources, has for years been spending far below its state appropriation for disability services.
Lawmakers said those millions of dollars could have been spent on addressing a glaring staff shortage of in-home workers.
In prior years, before the health department was split into three new apartments, money meant Individuals with Intellectual and Developmental Disabilities (IDD) was shuffled around to pay for other things. A DOHS leader told lawmakers that some of the money was spent on COVID-19 tests and contract nursing.
“I understand the need to rob Peter to pay Paul, but we’re robbing people with disabilities to pay for COVID testing,” said Del. Michael Hite, R-Berkeley.
DOHS Secretary Cynthia Persily explained that the departments were no longer taking any money out of its IDD services to pay for other things. The continuing unused funds, she said, were attributed to the pandemic, where people weren’t as comfortable with in-home care and didn’t utilize the state’s IDD waiver program that helps fund those services.
“So of course our spend went down dramatically,” Persily said. “Our spend is just now getting back to where it should be and rightsizing.”
But lawmakers pushed back, saying that the unspent money earmarked for the IDD population could have gone to improving the state’s Medicaid reimbursement rate.
West Virginia uses state and federal money from Medicaid to reimburse private companies that employ direct care workers. Money from that reimbursement rate can be used to fund their salaries.
The low rate, providers said, is tied to paying workers around $11 an hour; the wage rate has contributed to staffing shortages around the state.
“We’ve had to turn away about 102 residents who have needed services simply because we could not staff beds,” said Ray Ratke, CEO of enCircle, which provides services and staff to Individuals with Intellectual and Developmental Disabilities. “We’re operating at a loss that is unsustainable.”
EnCircle and similar companies pleaded with lawmakers to improve the reimbursement rate, but the session ended without any change.
DOHS leaders shifted the blame about staffing shortage back onto providers, saying that they could have used $200 million received via pandemic-relief dollars to fund caregiver raises. A rate study last year suggested that a salary range should be closer to $15.50-$18.60 per hour.
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North Carolina - Agreement Could Resolve Litigation Over Services for Disabled People in NC
Associated Press, via US News, April 12, 2024
North Carolina's health agency and a nonprofit defending people with intellectual and development disabilities have reached an agreement that could resolve a lawsuit seeking action to help those who can't live at home because services in their communities are lacking.
The Department of Health and Human Services and Disability Rights North Carolina announced this week they had filed in court a proposed order that would address litigation filed in 2017 by Disability Rights, individuals who need services and their guardians. It would also replace a 2022 ruling in that lawsuit from Superior Court Judge Allen Baddour that demanded DHHS provide more community services by certain dates.
Judge Baddour's order, in part, directed new admissions at state-run development centers, private intermediate care facilities and certain adult care homes had to stop as of early 2028 for people with intellectual and developmental disabilities. The state appealed Baddour's decision to the Court of Appeals, saying such changes would close some group homes and cause instability among people who prefer living in their current situations.
Baddour delayed enforcement of his order in the meantime, which gave legal parties time to work out an agreement.
In a joint news release Wednesday, state officials and Disability Rights North Carolina said the consent order — if approved by Baddour — would create a two-year period in which DHHS would work to move more people into community-based services and remove them from institutional settings if they wish. The department also would implement a plan to address a shortage of well-paid direct-care workers. Detailed reporting requirements also would allow the legal parties and the judge to assess results and proposed future benchmarks, the release said.
“This proposed agreement marks the beginning of change, not the end," Disability Rights North Carolina legal director Emma Kinyanjui said in the release, adding the efforts will help get “change started now — instead of spending time and focus on the appeal.” And Kelly Crosbie, the state's director of the Division of Mental Health, Developmental Disabilities and Substance Use Services, said “people with disabilities should have choices and be able to access services in the setting that is the best fit for them."
The litigation, in part, stems from a 1999 U.S. Supreme Court ruling that declared people with disabilities have the right, with conditions, to received state-funded services in their communities, instead of in institutions.
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[Please click on blue link to view information about the bill]
VOR SUPPORTS:
S.4120 / H.R.,7994 - This bill would increase FMAP and offer grants to all DSPs and caregivers for the elderly and for people with I/DD and autism.
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:
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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Direct Support Professionals!
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In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to receive our newsletter.
We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.
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