May 10, 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.

VOR's 2024 Legislative Initiative

Our D.C. Fly-in was an incredible success this year. After years of being marginalized and dismissed as inconsequential, we really felt as though our message was being heard this year, and that we had been granted a seat at the table in discussing issues pertaining to people with severe and profound I/DD and autism.

In a word, it felt as though our position for Choice and protecting a full range of options was being treated with respect.

There's more to be said, and it will be said in the upcoming issue of the VOR Voice. But in the meantime, we would like to give particular thanks to our Legislative Advisor, Gayle Gerdes, and to thank all of the participants who worked so hard this year.

If you would like to read the materials we submitted to Congress,

Click here

If you would like to watch a YouTube presentation on "what it's like to be part of the VOR Initiative,

Click here

We are still accepting donations to help defray the cost of this event.

Please Click Here To Sponsor the VOR 2024 D.C. Initiative

VOR's 2024 Annual Meeting

Tentative Date: June 2, 2024

We will begin with a Board meeting open to members, discussing the state of our organization and the direction of our advocacy work, followed by our annual

Reports from the States, an auction for the 2024 VOR Bear by Mary Reese.

We are still in the process of lining up speakers, but we are thrilled to announce that we will feature our dear friend, Jackie Kancir as our Keynote Speaker. For those who don't know Jackie, she is the National Policy Director of the National Council on Severe Autism, the Tennessee Mom of a daughter diagnosed with SYNGAP1, a frequent blogger at "What We Need Yesterday", and the co-proprietor ( with her daughter Jadyne) of Bunny Egg Acres.

The best way we could introduce you to Jackie would be to share one of her recent posts, below,

A Major Victory for Disability Housing - and Choice - in Tennessee

By Jackie Kancir, National Council on Severel Autism, May 7, 2024

State policy can be like the Wild West. It’s very tribal, outsiders aren’t welcomed kindly, and disagreements can quickly turn into metaphoric hair-trigger duels in the public square. Last month, the State of Tennessee had its own display of this.

Tennessee is only in legislative session from January through April. That’s a chaotic, high-speed, tenuous time for policymakers. I took the national role as Policy Director for NCSA in early February. By March, my schedule was buried from morning to night with Zoom calls as I worked to grow the National Grassroots Network and other matters related to my new role. Finding time to microwave my cup of coffee ranked way higher on my priority list than checking in on state policy.

One Friday, I received a call, “Did you hear about this?” Over the weekend, my email and Facebook Messenger piled high with more concerns: “What are you going to do about this?” “You need to make a public statement. You can’t let this happen.” “How could they?!”

The TN Disability Coalition (TDC) was opposing a bill I knew nothing about, HB2497.

Two nonprofits were offering innovative housing solutions for people with I/DD in the state, and neither were asking the government for a dime. But the Department of Intellectual & Developmental Disabilities (DIDD) code required buildings to be 500 yards apart and housing no more than four people per building — and this code would prevent these new housing options. They were simply asking for those two factors to be waived for them to open their new programs.

Gloriana sought to build residential homes within an existing senior living community. This novel approach would be an inter-generational, inter-ability community where aging caregivers and their adult children with IDD, no matter the level of care, would be able to reside together. Anyone who has ever experienced the emotional hangover after watching the poignant documentary Mimi & Dona is surely celebrating that concept. They planned to add three homes that each provide four “Jack and Jill” style suites, where the parent and loved one will have their own bedrooms and share a conjoined bathroom.

The Tennessee code would prohibit these developments. Without HB2497 providing an exception for these two programs, neither of these 501c3s could move forward in offering people with I/DD additional housing options in Tennessee.

To plot a path forward, I wanted the full story. I vigorously analyzed all opposition statements, social media posts, email blasts, YouTube videos, videos of prior subcommittee hearings, and the full text of the bill and fiscal note. I also met with parents who had direct experience with the nonprofits, staffers of the bill sponsors’ offices, the organization most opposed to the bill, the Chief of Staff of BrightStone, a family member of a former resident of the old state-run TN hospitals, lobbyists, and leaders of other national organizations who had dealt with similar issues. I then got to work pouring through DIDD code, case law, CMS rules, historical news articles related to Tennessee’s dark history with its former state-run hospitals, and peer-reviewed academic research.

Only after this exhaustive work did I make my decision to strongly support HB2497. The horse I picked were strangers to me, but my analysis determined this was unequivocally the right choice – though my fellow disability rights activists would surely disapprove.

The bomb of my support of HB2497 has led to more meaningful discussions and focus on the real problems facing people with high acuity needs in Tennessee. We are finally discussing how to protect against the experience of institutionalization and acknowledging the baseless assumptions that HCBS was automatically anti-institutional so long as you “protected” people with disabilities from living in houses with more than three other people and kept those houses further than 500 yards apart.

The hearing I testified at was uncharacteristically long, an hour and a half. You can watch the bill hearing here. Testimony starts at the 15 minute mark with the opposition side. Our side starts at the 21 minute mark. Then it’s back and forth for over an hour.

To spare you the agony, however, in short, I argued for self-direction and individual choice. I supported my premises with relevant recent research. I challenged the code as obsolete, informing the legislative body that the status quo HCBS in Tennessee has institutional experiences itself. The other side argued to keep the status quo and deny choice, supporting their position only by a survey of 1000 people in 1999 and the complete lie that this bill would risk opening the state to an Olmstead violation.

For a three-minute summary of my position, listen to the opening I’d prepared for a hearing that ended up canceled. Despite the cancellation, I provided this speech in written form to the organization opposing the bill. Additionally, NCSA published a formal letter of support to the State of Tennessee for HB2497, complete with a litany of links for the opposition to gain clarity. Thus, fully aware of the real problems of current institutional experiences facing Tennesseans and with plenty of sources to show this bill would not violate any federal laws, the opposition went forward with their distracting propaganda anyway, defending lack instead of choice. Parents with loved ones on ECF’s empty waiver understandably were outraged.

Continued

Medicaid ‘Unwinding’ has Taken a Toll on Disabled People Who Lost Benefits

By Daniel Chang, KFF Health News via The USA Today, May 9, 2024

Jacqueline Saa has a genetic condition that leaves her unable to stand and walk on her own or hold a job. Every weekday for four years, Saa, 43, has relied on a home health aide to help her cook, bathe and dress, go to the doctor, pick up medications and accomplish other daily tasks.

She received coverage through Florida’s Medicaid program until it abruptly stopped at the end of March, she said.

“Every day the anxiety builds,” said Saa, who lost her home health aide for 11 days, starting April 1, despite being eligible. The state has since restored Saa’s home health aide service, but she leaned on her mother and her 23- and 15-year-old daughters while struggling to regain her Medicaid benefits.

“It’s just so much to worry about,” she said. “This is a health care system that’s supposed to help.”

Medicaid’s home and community-based services are designed to help people like Saa with disabilities and who need help with everyday activities, stay out of a nursing facility. But people are losing benefits with little or no notice, getting bad advice when they call for information, and facing major disruptions in care while they wait for the issue to get sorted out, according to attorneys and advocates who are hearing from patients.

In Colorado, Texas, and Washington, D.C., the National Health Law Program, a nonprofit that advocates for low-income and underserved people, has filed civil rights complaints with two federal agencies alleging discrimination against people with disabilities. The group has not filed a lawsuit in Florida, though its attorneys say they’ve heard of many of the same problems there.

Attorneys nationwide say the special needs of disabled people were not prioritized as states began to review eligibility for Medicaid enrollees after a pandemic-era mandate for coverage expired in March 2023.

“Instead of monitoring and ensuring that people with disabilities could make their way through the process, they sort of treated them like everyone else with Medicaid,” said Elizabeth Edwards, a senior attorney for the National Health Law Program. Federal law puts an “obligation on states to make sure people with disabilities don’t get missed.”

At least 21 million people nationwide have been disenrolled from Medicaid since states began eligibility redeterminations in spring 2023, according to a KFF analysis.

Continued

April and May have seen a flurry of legislative activity in Congress and a flood of new "Final Rules" from various agencies within the Department of Health and Human Services. It's difficult to keep up.

In recent weeks we've seen Senator Casey's bill supporting the Long-term Care Workforce (to which VOR contributed) and a Guardianship Protections Bill (on which we didn't work, but you can read about it here). We've also seen Representative Debbie Dingell introduce a bill supporting the permanent reauthorization of the Money Follows the Person Rebalancing Demonstration Program, which we oppose due to it's having no oversight or examination by the General Accounting Office and the Congressional Budget Office. How irresponsible is it to make permanent a bill that has no clear goals and no definition of what "rebalancing" would mean. To date, the language in the bill has not been submitted, but it is probably similar to the bill entered in the 117th Congress,which is available here.

Don't feel bad if you have been confused by all of this. Each of these agencies has been writing their final rules like there's no tomorrow, and it isn't easy to keep up.

Here are a few of the many....

Ensuring Access to Medicaid Services Final Rule

(The Access Rule)

The Ensuring Access to Medicaid Services (Access rule) final rule advances access to care and quality of care, and will improve health outcomes for Medicaid beneficiaries across fee-for-service (FFS) and managed care delivery systems, including home- and community-based services (HCBS) provided through those delivery systems. 

Visit the CMS Site here



More information on this bill here

Medicaid and Children’s Health Insurance Program Managed Care Access, Finance, and Quality Final Rule (The Managed Care Access Rule)

Managed care is the predominant delivery system in Medicaid and the Children’s Health Insurance Program (CHIP), with over 70% of Medicaid and CHIP beneficiaries receiving some or all of their care through a managed care plan.[1],[2] In recent years, CMS and states have strived to ensure beneficiaries’ access to high-quality care, ensure adequate provider payment, and provide comprehensive program monitoring and oversight. Executive Order 14009 in 2021 established the policy objective to protect and strengthen Medicaid and the Affordable Care Act (ACA), and to make high-quality health care accessible and affordable for every American.[3] In 2022, Executive Order 14070 directed agencies to identify ways to continue to expand the availability of affordable health coverage, to improve the quality of coverage, to strengthen benefits, and to help more Americans enroll in quality health coverage.[4] This final rule helps build stronger managed care programs to better meet the needs of the people enrolled in Medicaid and CHIP by improving access to, and quality of, care. 

The final rule specifically strengthens standards for timely access to care and states’ monitoring and enforcement efforts; enhances quality and fiscal and program integrity standards for state directed payments (SDPs); specifies the scope of in lieu of services and settings (ILOSs) to better address health-related social needs (HRSNs); further specifies medical loss ratio (MLR) requirements; and establishes a quality rating system (QRS) for Medicaid and CHIP managed care plans. 

Read more from CMS here

For more information, click here

Medicare and Medicaid Programs: Minimum Staffing Standards for Long-Term Care Facilities and Medicaid Institutional Payment Transparency Reporting Final Rule (The Nursing Home Staffing Rule)

On April 22, 2024, the Centers for Medicare & Medicaid Services (CMS) affirmed its commitment to hold nursing homes accountable for providing safe and high-quality care for the nearly 1.2 million residents living in Medicare- and Medicaid-certified long-term care facilities by issuing the Minimum Staffing Standards for Long-Term Care (LTC) Facilities and Medicaid Institutional Payment Transparency Reporting final rule. 

This final rule was informed by the feedback CMS received from over 46,000 public comments submitted in response to the proposed rule. Central to this final rule are new comprehensive minimum nurse staffing requirements, which aim to significantly reduce the risk of residents receiving unsafe and low-quality care within LTC facilities. CMS is finalizing a total nurse staffing standard of 3.48 hours per resident day (HPRD), which must include at least 0.55 HPRD of direct registered nurse (RN) care and 2.45 HPRD of direct nurse aide care. Facilities may use any combination of nurse staff (RN, licensed practical nurse [LPN] and licensed vocational nurse [LVN], or nurse aide) to account for the additional 0.48 HPRD needed to comply with the total nurse staffing standard.

CMS is also finalizing enhanced facility assessment requirements and a requirement to have an RN onsite 24 hours a day, seven days a week, to provide skilled nursing care. 

This final rule provides a staggered implementation timeframe of the minimum nurse staffing standards and 24/7 RN requirement based on geographic location as well as possible exemptions for qualifying facilities for some parts of these requirements based on workforce unavailability and other factors. The requirements of this final rule prioritize safety and health care quality while taking into consideration the unique workforce challenges some LTC facilities may be experiencing, especially those in rural areas. 

Continued on the CMS site

For more information on this one, click here

Final Rule: Federal Regulations for APS Programs (The Adult Protective Services Rule)

On May 7, 2024, ACL published a final rule to establish the first-ever federal regulations for adult protective services. The regulations take effect on June 7, 2024, but regulated entities have until May 8, 2028 to fully comply. 

On Tuesday, May 14 at 3 p.m. (Eastern), ACL will host a webinar to provide an overview of the rule. Advance registration is required. (A recording of the webinar will be available on this page later this month.)

APS programs across the country support older adults and adults with disabilities who experience, or who are risk of, abuse, neglect, self-neglect, or financial exploitation. APS programs investigate reports of maltreatment; conduct case planning, monitoring and evaluation; and provide, or connect people to, a variety of medical, social service, economic, legal, housing, law enforcement, and other protective, emergency, or support services. Over the past decade, ACL has led federal efforts to support the critical work of APS programs through a variety of initiatives.

Continued

ACL - Preventing and Addressing Sexual Violence Against People with I/DD

April 30, 2024

To close Sexual Assault Awareness Month (SAAM), we are sharing this letter from Alison Barkoff, who leads ACL, Jeff Hild, who leads the Administration for Children and Families, and Admiral Rachel Levine, the HHS Assistant Secretary for Health, which was written to improve support for people with intellectual and/or developmental disabilities who experience sexual violence – and to prevent it from occurring.

The letter and the list of recommendations it references were sent to HHS-funded programs, including rape crisis centers, behavioral health programs, violence against women health program initiatives, and those that serve people with I/DD and are now posted on ACL’s website (as a combined PDF).

Continued

We can't help wonder why the ACL doesn't mention this as a responsibility of state Protection and Advocacy agencies, to which they provide millions of dollars per year. Are they not considered part of the system to protect people with I/DD against abuse, neglect, and sexual violence???

Paying Caregivers More Could Boost Nebraska’s Economy − New Research

By Susan Rebecca Reay, University of Nebraska Omaha, via The Telegraph, May 6, 2024

There are over 10,000 paid caregivers of people with disabilities and adults over 65 in Nebraska, where we work and often conduct research. Across the country, there are 3.7 million paid caregivers, and the federal government expects their ranks to grow by 22% over the next decade. Compensation for these workers, however, is extremely low.

The median hourly wage for Nebraska’s paid caregivers in 2023 was US$13.55 per hour. Although the typical caregiver logs significant amounts of overtime beyond a 40-hour week due to the chronic labor shortage, they still take home just $32,960 per year. And that’s far below the $49,009 annual income, according to one estimate, that single adults needed to make ends meet in Nebraska.

While paid caregiving is among the country’s fastest-growing occupations, the job’s low pay and meager benefits contribute to high turnover. A shortage of these workers is compromising the quality of care and creating long waitlists for people who need it.

The share of paid caregivers who quit within a year varies widely, ranging from 28.5% in the District of Columbia to 59% in Wyoming. About half of Nebraska’s paid caregivers leave their jobs every year.

The National Alliance for Direct Support Professionals, an association that represents caregivers and their employers, estimates that hiring new caregivers costs anywhere from $2,413 to $5,200. Conducting fewer background checks and training new hires less frequently saves the state and federal governments money, given that the employers foot that bill through contracting with state governments.

Unlike in other industries, the employers of caregivers for people with disabilities can’t just pay workers more to make these jobs more alluring. That’s because their wages are set or heavily influenced by state and federal funding levels.

For the most part, caregiver pay is set by Medicaid, the government’s health insurance program for low-income Americans, and Medicare, which provides Americans over 65 and younger people who receive disability benefits with health insurance. States administer Medicaid and share its costs with the federal government.

People with disabilities who frequently get new paid caregivers go to the emergency room more frequently, have more instances of abuse and neglect and get injured more often.

Caregivers who make more spend more

We teamed up with Ashley Robinson, a social work graduate student at the University of Nebraska at Omaha, to estimate the economic boost Nebraska would get if it compensated caregivers better. We also worked on this project with Nebraska Association of Service Providers, a nonprofit association that represents the state’s intellectual and developmental service provider organizations.

By analyzing data for similar professions, we determined that paid caregivers are compensated less than their closest counterparts, including child care workers. We estimated that closing the wage gap between paid caregivers and child care workers would require a 5.9% higher starting wage and a 3% increase in the median wage.

Using the IMPLAN multiplier system, which breaks down how changes to an industry can relate to the overall economy, we also calculated that boosting wages by that amount would lead to a rate of return of $1.40 for every $1.00 in additional tax dollars spent on raising pay for caregivers.

We identified three main drivers of this economic boost. First, paid caregiver turnover would decline. Second, many unpaid family caregivers would be able to go back to work – earning a living and paying taxes. Third, state and local tax revenue would rise once caregiver positions were filled.

These factors would amount to an estimated $401.3 million stimulus for Nebraska’s economy.

We believe that our findings illustrate how low pay doesn’t just harm caregivers and their employers. It’s also costly for state governments.

Read the full article here

Massachusetts - Healey Administration Denies Family’s Request to Place Severely Disabled Woman at Wrentham Center

By Dave Kassel, The COFAR Blog, May 10, 2024

The Healey administration is refusing to admit a severely disabled woman to the state-run Wrentham Developmental Center even though state officials have been unable to find a suitable placement for her in any other residential setting.

As a result, Kristen Robinson, 50, who is profoundly intellectually disabled, blind, and quadriplegic, has been confined to Faulkner Hospital in Boston since early last month following a choking incident in her family’s home. She has seizure disorder and severe dysphagia, a medical condition that causes an inability to swallow.

Emails show that the Department of Developmental Services (DDS) denied a request by the hospital last month to discharge Kristen to the May Center, a medical unit at the Wrentham facility.

Kristen’s sisters and co-guardians, Kim Meehan and Karen Brady, want her to be admitted permanently to the Wrentham Center. They argue that Wrentham provides a higher and more comprehensive level of care than can be found in the DDS-funded, provider-based group home system.

Administration officials, however, have insisted that suitable settings for Kristen can be found in the group home system.

But the only group home identified so far by DDS as a possible setting for Kristen rejected her placement there in March because the home cannot accommodate residents in wheelchairs. In addition, as many as 25 nursing homes have indicated they would be unable to accommodate Kristen.

Continued

West Virginia - Intellectual & Developmental Disabilities Waiver At Risk For Cuts

By Hailey Lanham, WTAP, May 5, 2024

The I/DD waiver, is experiencing a crisis due to recent budget cuts. These cuts have put agencies in a tough position regarding how they can continue caring for those in need of care.

To qualify for this waiver, you must be unable to do three out of six things: learn, communicate, move around freely, self-care, live alone, or make decisions for yourself. You also must be at least three years old and have been diagnosed before the age of 22.

“The Medicaid budget was not only reduced, but it is not only affecting our IDD population but it is people elderly people and people that get waiver services, which means that’s a Medicaid service, that does not have to be in a licensed group home and so the legislature, even though the state boasts that it has a surplus it has turned around and not only reduced the budget. So they reduced the budget by 10 million dollars and then they turned around and gave up over 30 million dollars in matching funds from the federal government.” said Jason Lynch, LINX, owner.

What does the future look like for those with disabilities if this waiver is reduced or cut?

“It is going to be very bad because not only in West Virginia, there is over 6 thousand people that get services, but then on top of that, there are over 600 waiting to get services which means moms and dads won’t be able to work. That means people are going to be stuck in nursing homes and state hospitals.

Just because there is not enough providers or the appropriate rate of reimbursement to help.” said Lynch.

With only $11 an hour received, employee rates are down, and now, with recent cuts, agencies, and caretakers can be hard to find.

“At one point in 2012, there were 14,000 people in our field providing services to all companies and now it is reduced in half and in our field I think it is a shame that our staff cannot be paid more just because reimbursement rates are too low. Our direct care staff and anybody who provides care to someone with disabilities, this is like a lifelong partner in their care, and you just can’t treat it like someone who just works at a fast food place. This is someone who is involved in someone’s life practically since birth that provides services to them.” said Lynch.

In 2012, the workforce included 14,500 people. Now, that number stands at around 7,000.

Read the full article here

[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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Direct Support Professionals!

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DIRECT SUPPORT PROFESSIONALS!

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

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

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

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

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What's Happening In Your Community?

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