March 8, 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.

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March is Developmental Disabilities Awareness Month!


VOR's 2024 Legislative Initiative

MAY 7 - 9, 2024

Registration Is Open!

Our 2024 Legislative Initiative will be held in Washington, D.C.

May 7th and 8th.

Additional meetings may be held on the 9th,

depending on the availability of key staffers.

We suggest registering now if you think you may want to join us in D.C.

We no longer have rooms available at YOTEL, having filled all of the rooms we reserved in advance. If enough people register for the conference, we may be able to get a good price for another block of rooms, but as the date approaches, the price of hotel rooms in D.C. will rise.

We plan to arrive on the afternoon of Monday, May 6th, and have an informal

get-together that evening. We will meet with congressional staffers from our state representatives on Tuesday, May 7th and Wednesday, May 8th. We also plan on meeting with staff on some of the congressional committees that are discussing the bills that affect our loved ones with I/DD and autism, and some of the federal agencies like DOJ, DOL, CMS, HHS, and ACL to remind them of our issues and our concerns with many of their activities.

As always, we will provide our participants with contact lists for the congressional staff members for their state's D.C. offices. In the weeks before the initiative, we will hold meetings on Zoom to go over the materials we will be sharing with legislative offices and to help participants prepare for their meetings.

For information about how to register for the conference, please:


We ask that all participants in the 2024 Legislative Initiative are

current members of VOR.

Unable to attend this year?

You can still help us to advocate for your family.

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


VOR's Quarterly Networking Meeting

March 25, 2024

5 pm Eastern, 4 pm Central, 3 pm Mountain, 1 pm Pacific

on Zoom

This month's topic:

"How can we better communicate and connect with others in-state"

We often rely on our ICF family groups to network with others who share our concerns, but what do we do when we need to connect other ICF groups, or folks with similar concerns who have loved ones in HCBS group homes or who receive services for their child who lives with them in their own home?

When an ICF closes, how do we keep the support and advocacy we once knew when families are separated and their loved ones live elsewhere across the state?

Not everyone wants to put up a Facebook page or start another in-state organization with monthly meetings. Not everyone can make it to legislative hearings in the state capital. Some of us simply want to create better networks for like-minded folks, without obligations.

Join with us on Monday, March 25th as we discuss ideas for how we can work to improve networking and in-state advocacy.

Registration for this is free, and is open to the public. You don't need to be a member of VOR to attend this meeting.

Please click here for more details and a link to the Zoom meeting.


The President's Committee for People With Intellectual Disabilities - Next Meeting March 21, 2024

The President's Committee for People with Intellectual Disabilities (PCPID) will host a virtual meeting for its members to address issues surrounding Home and Community Based Services (HCBS) to be examined in the Committee's Report to the President. All the PCPID meetings, in any format, are open to the public. This virtual meeting will be conducted in a discussion format with committee members addressing the issues and recommendations identified by PCPID workgroups proposing to be incorporated in the PCPID Report to the President.

We urge our members to attend this virtual meeting, and to submit comments (polite comments, please) to the committee regarding your loved ones and their needs for residential, medical, and behavioral services.

Comments must be submitted by March 12, at 5 pm ET.

Please click here for more information, to register for the meeting, or to submit comments

National News:

Sen. Tim Kaine Introduces S.Res.567:

A resolution recognizing the seriousness of widespread health care worker burnout in the United States and the need to strengthen health workforce well-being, and expressing support for the designation of March 18, 2024, as the inaugural "Health Workforce Well-Being Day of Awareness".  


Read the text of the Senate Resolution here

For Patients With Intellectual And Developmental Disabilities, Access To HCBS Remains Grim

By Patrick Filbin, Home Health Care News, March 7, 2024

Providers and stakeholders dedicated to improving access to home- and community-based services (HCBS) are at a crossroads, particularly when it comes to caring for intellectual and developmental disability (IDD) patients.

“The direct support workforce crisis continues to be the single greatest barrier to access to community-based services for people with intellectual and developmental disabilities,” Lydia Dawson, VP of government relations at ANCOR, told Home Health Care News. “We’re still seeing 95% of community providers experiencing moderate or severe staffing shortages — just in the past year alone — and those shortages have reached the point that they’ve caused providers to shutter programs and close services.”

Dawson and her team at ANCOR – an advocacy organization for over 2,000 community-based providers – recently published a report with United Cerebral Palsy that paints a sobering picture of the challenges facing individuals with intellectual and developmental disabilities (IDD) who rely on HCBS across the U.S.

The report — “The Case for Inclusion 2024: Transforming Temporary Progress into Long-Term Sustainability” — found that the number of people with IDD on waiting lists for HCBS grew to about 497,000, or by 3.3%, in 2023 compared to the year before.

The report also found that over 80% of people on HCBS waiting lists lived in one of five states: Texas, South Carolina, Florida, Illinois, and North Carolina. Nearly two-thirds of the people were in Texas alone.

But the waiting lists alone are not the only factor that determines whether or not someone can access HCBS, Dawson explained.

“As soon as someone is able to get off of a waiting list, they still face a number of barriers to access community inclusion,” Dawson said. “On top of finding a provider — which we saw 75% of providers who offered case management reporting difficulties connecting people with available providers — we are also seeing people struggle to have health related social needs met that contribute to their ability to access home- and community-based services.”

Adequate staffing is the No. 1 reason why HCBS access is an issue, Dawson said.


Key Findings from ANCOR's Case for Inclusion 2024

Among the top findings in the Case for Inclusion 2024:

  • Hourly wages for direct support professionals (DSP) wages increased from $13.61 in 2020 to $14.41 in 2021. This marks the second consecutive year of wage increases made possible, at least in part, to temporary emergency funding authorized in response to the COVID-19 pandemic.

  • Vacancy rates for both full- and part-time DSP positions increased substantially, with full-time vacancy rates increasing to 16.5% and part-time vacancy rates increasing to 20.3%. Meanwhile, turnover among DSPs remained virtually unchanged, from 43.6% in 2020 to 43.3% in 2021.

  • Nationally, there were 497,354 people on state waiting lists for home- and community-based services (HCBS) waivers. More than 4 in 5 (80.5%) people with IDD waiting for home- and community-based services lived in one of just five states: Texas, South Carolina, Florida, Illinois and North Carolina.

  • Seventeen states and the District of Columbia have closed all of their state-run institutions. This is an increase from 16 states in last year’s Case for Inclusion, as Kentucky became the latest state to fully deinstitutionalize. Additionally, there were 1,357 fewer people with IDD living in a large, state-run institution in 2019 than in 2018.

  • Thirty-eight states participated in the federal Money Follows the Person program, earmarked to support older adults and people with disabilities to transition from institutions into home- and community-based settings. This represents an increase after multiple years of modest declines, with Kansas and New Hampshire rejoining the ranks of states offering this valuable program.

  • Eighteen demonstration waivers that include initiatives to address social determinants of health have been approved, while 17 more are pending. Primary social determinants of health impacting people with IDD include food security and affordable, accessible housing.

Review the Key Findings here

Federal Government to Investigate Private Equity’s Influence on HCBS, Nursing Homes, Home Health

By Kathleen Steele Gaivin, McKnight's, March 7, 2024             

The Justice Department, Federal Trade Commission and Health and Human Services Department have announced plans to jointly investigate private equity’s influence on healthcare.

“The cross-government inquiry seeks to understand how certain healthcare market transactions may increase consolidation and generate profits for firms while threatening patients’ health, workers’ safety, quality of care and affordable health care for patients and taxpayers,” the agencies said Tuesday. The request for information about the effort specifically mentions nursing homes, home- and community-based services providers, home health agencies, hospice providers and other service providers.

“When private equity firms buy out healthcare facilities only to slash staffing and cut quality, patients lose out,” Federal Trade Commission Chair Lina M. Khan said in a press release. “Through this inquiry, the FTC will continue scrutinizing private equity roll-ups, strip-and-flip tactics and other financial plays that can enrich executives but leave the American public worse off.”

The request for information seeks public comment on deals conducted by health systems, private payers, private equity funds and other alternative asset managers that involve healthcare providers, facilities or ancillary products or services. The public has until May 6 to respond with comments.

Comments may be submitted online or via mail.


Download the ROI here

Opinion: Morally and Practically Indefensible

By John Hirschauer, City Journal, March 6, 2024

Henry and Elizabeth Lahrmann were born with severe neurological damage. As infants, they were diagnosed with profound intellectual disabilities and suffered from West Syndrome, a seizure disorder. Today, both are tube-fed and quadriplegic, and their infantile spasms developed into an intractable condition characterized by periodic, life-threatening seizures. Despite these challenges, their mother, Caroline, says that Henry and Elizabeth are happy, largely because of where and with whom they live.

As children, Henry and Elizabeth lived at the Heinzerling Memorial Foundation, a 100-bed intermediate care facility (ICF) in Ohio founded in 1959 by a couple who mortgaged their family home to build and staff an institution offering around-the-clock care to severely disabled kids. Henry and Elizabeth thrived on Heinzerling’s campus, Caroline said, where they developed lifelong friends and grew increasingly independent with the aid of the facility’s protective environment and wraparound medical services.

“It’s the institution that gives them greater independence,” Caroline said in 2019. “Henry can wheel himself independently. He is safe everywhere he goes, and that gives him more independence. Elizabeth is getting so much more socialization at an ICF than she would get at home,” where, Caroline said, Henry and Elizabeth would be comparatively isolated. Today, Henry and Elizabeth continue to live happily at an Heinzerling-operated ICF.

Caroline is thrilled with her now-adult children’s care. Members of the Biden administration, however, are not.

Prominent disability advocates, who have found sympathetic ears in Biden’s cabinet, have long argued that “congregate settings,” like Heinzerling, are “segregated”—meaning, in this context, that they are predominantly inhabited by disabled people—and that government agencies should use their rulemaking and enforcement powers to disfavor and eventually close all such facilities, relocating residents to smaller, “community-based” settings. Such advocates—often higher-functioning disabled people who consider themselves spokesmen for the more severely disabled people living in institutional environments—argue that congregate settings unnecessarily limit residents’ freedom and are inherently prone to the kinds of abuse and neglect seen at some nineteenth- and twentieth-century asylums, care homes, and orphanages. The Department of Health and Human Services’ Office for Civil Rights (OCR), which interprets and enforces federal civil rights law relevant to health- and social-services providers and recipients, apparently agrees with the advocates’ position, and proposed a rule late last year that could upend the lives of millions of Americans like Henry and Elizabeth.

The proposed rule would amend OCR’s interpretation of Section 504 of the 1973 Rehabilitation Act, which bans disability-based discrimination in federally funded programs, in two major ways. First, it would bar state child-welfare agencies from considering congregate institutions, such as Heinzerling, “the most appropriate long-term placement for children, regardless of their level of disability.” Second, it would redefine “integrated settings” as those that give disabled people the “opportunity to interact with non-disabled persons to the fullest extent possible” and “are located in mainstream society.” Both changes were drafted with lawyerly precision and, if published as drafted, will eventually be leveraged by activist nonprofits and disability-rights ideologues in the Justice Department to shutter nursing homes, psychiatric hospitals, and more.


NIH Told To Improve Coordination Of Federal Autism Activities

By Shaun Heasley, Disability Scoop, March 4, 2024

Federal officials should be doing more to monitor and coordinate efforts to address the needs of those with autism, government investigators say.

With 19 different agencies conducting autism activities ranging from research to prevalence tracking, education and employment, it is up to the National Institutes of Health to ensure that they are working together and not duplicating work. That is largely managed by the national autism coordinator and the Interagency Autism Coordinating Committee, or IACC, a panel comprised of government officials and members of the autism community.

Investigators with the Government Accountability Office reviewed documentation and interviewed officials from federal agencies as well as private autism organizations to determine how effective the current system of coordination is.

The GAO found that while the NIH followed most of its recommended practices for collaboration, there is room for improvement, according to a new report. Specifically, investigators said that there is work to be done in defining common outcomes and ensuring accountability.

“We found that IACC strategic plans have established goals; however, the IACC does not break down the goals into tangible, measurable objectives, nor does NIH or the national autism coordinator,” the report indicates. “Additionally, NIH coordination efforts also partially followed the leading practice of ensuring accountability because although some NIH and IACC reports describe federal and non-federal autism activities, they do not clearly track or report progress toward goals in a way that ensures accountability.”


Read the GAO report here

Note: Unfortunately, there is no mention of individuals with Profound Autism as a distinct group in the GAO's assessment of the National Institutes of Health (NIH) or the Interagency Autism Coordinating Committee (IACC).

State News:

Illinois - Legislators Say Disabled Workers Could Be Fired if Sub-Minimum Wage is Ended

By Catrina Petersen, The Center Square, March 6, 2024

 Illinois House Bill 793 would require adults with disabilities to receive minimum wage. State legislators and CCAR Industries, a non-profit who’s mission is to enhance the quality of life of East Central Illinois citizens with developmental disabilities, are against the bill.

State Sen. Chapin Rose, R-Mahomet, said under federal law there’s a waiver for minimum wage because the productivity of someone with certain disabilities isn’t the same as someone who has full-cognitive abilities.

“It’s neat to see how happy these people are to get their paycheck. They made their contribution to society at the level they are able to contribute. Who wouldn’t in a perfect world want to do this [mandate at least minimum wage for disabled adults]? But the reality is, you’re going to put these people out of work,” said Rose.

Rose said that's because companies would hire more productive employees for the minimum wage price. Sheltered workshops would cease to exist. Rose said the state can’t fund the increase in other wages impacting the disabled either.

"We didn’t even get through one half of this fiscal year before [Gov. J.B. Pritzker] tried to cut the wages to the developmental service providers,” said Rose. “These are the frontline workers, doing the meds, feeding and bathing. So, who really believes these guys when they say, ‘Oh, we’ll fund it.’ Really?”

The Illinois Department of Human Services made cuts to the amount of hours it covers for care of the developmentally disabled. Service providers across the state are dealing with an 8.7% reduction in hours covered by the state.

The money the state allocates to pay for those hours goes towards employee salaries, and without state funding, providers have to cover those costs, or reduce care hours.

HB793 would get rid of the federal waiver that allows companies to pay disabled adults sub-minimum wage. The bill is backed by Democrats. Recently, state Rep. Katie Stuart, D-Edwardsville, expressed disapproval for the bill.

"They are calling it the Dignity in Pay Act, and I am here to counter that narrative," Stuart said in October. "The bill is not agreed, as Charlie [Meier] pointed out when 33 out of 35 providers are not in agreement, that is not agreed." 


Kentucky - Opinion: Senate Bill 173 Aims to Safeguard the Most Vulnerable Among Us

By Ann Jeanette Pierce, Times Tribune, March 1, 2024

In the heart of our community lives a 32-year-old woman with Level 3 autism, the most severe form, characterized by significant communication challenges and a profound dependence on others for basic needs. Her days are filled with simplicity and an innocent love for “The Little Mermaid,” yet hidden behind her sky-blue eyes is a world fraught with vulnerability and mistreatment.

This young woman’s life in a Medicaid-funded Supports for Community Living (SCL) home is supposed to offer her safety and dignity as an alternative to institutional living. However, the reality is starkly different. Despite the caregivers’ best efforts, the industry faces challenges in attracting and retaining compassionate and competent staff, leading to instances of neglect and abuse that go unreported and unaddressed due to the victims’ inability to communicate.

The statistics are alarming: a survey by the Disability and Abuse Project reveals that 70% of individuals with developmental disabilities in group homes have experienced neglect or abuse. ( This is not just an isolated issue but a systemic failure that demands immediate action.

In response, Senator Reginald Thomas (D-KY) has introduced Senate Bill 173, which gives a parent the right to place a camera in the private residential room of their adult child’s group home.

This measure seeks to protect residents by deterring potential abusers and providing crucial evidence for holding perpetrators accountable. Despite opposition from various associations citing privacy concerns and potential misuse, the bill emphasizes the right to safety and security over privacy, especially for those unable to voice their own experiences.

The objections raised against the bill overlook the essential need for transparency and accountability in the care of our community’s most defenseless members. It’s imperative to understand that surveillance serves as a voice for those who cannot speak and a guardian for those who cannot protect themselves.

Ann Jeannette Pierce is a native of Owensboro, Kentucky. Her daughter has severe autism. For more information on severe autism please visit the National Council on Severe Autism website or fb page.


Read Senate Bill 173 here

North Carolina - Beyond Institutions: Can New Plan Help NC Residents with Intellectual and Developmental Disabilities?  

By Anne Blythe, NC Health News, March 8,2024

North Carolina public health officials are fine-tuning government strategies to give people with intellectual and developmental disabilities more options for care outside institutional settings.

The state Department of Health and Human Services has been collecting comments for the past three weeks on its proposed blueprint for the rest of 2024 and 2025 to improve the lives of people with disabilities and brain injuries, along with those of their families and caregivers.

It’s the Olmstead Plan in recognition of the landmark 1999 U.S. Supreme Court decision that found it discriminating and unlawful to segregate people with disabilities without opportunities for work or play in their communities. The blueprint, under development and set to be published in April, is an extension of the state’s ongoing effort to comply with that ruling.

“The Olmstead Plan is about empowering individuals with disabilities with the services and supports they need to choose how and where they want to live in their communities,” Debra Farrington, DHHS deputy secretary for health equity and chief health equity officer, said in a recent department news release. “Our goal is to ensure the right resources at the right time and in the right setting so North Carolinians with disabilities are able to thrive in their daily lives.”

Significant court ruling

The plan will be published nearly 18 months after a sweeping court ruling by Judge Allen Baddour in the Samantha R case, a challenge filed by Disability Rights North Carolina that claimed the state was not providing enough community- and home-based services for residents with intellectual and developmental disabilities.

Disability Rights argued that while there had been planning to provide more care outside institutional and congregate care settings, the services were not coming to fruition quickly enough.

Baddour’s extensive order set timelines for meeting those goals, a decision appealed by DHHS, in part because it established 2028 as the date for ending new admissions into long-term or intermediate residential care facilities. That cutoff point and other parts of the order caused backlash from some of the very people the judge’s findings were meant to help.

So on May 30, 2023, Disability Rights went back to Baddour and asked him to modify his order to remove the portion that blocked new admissions to private intermediate care facilities after 2028.

That case has been tied up in the appeals court process and potential settlement talks, but while the uncertainty lingers, the judge temporarily halted the implementation of his ruling.

Read the full article here

North Carolina - School District Admits It Restrained Or Secluded Students 864 Times In 6 Months

By T. Keung Hui, The News & Observer, via Disability Scoop, March 5, 2024

The Wake County school system is now acknowledging restraining and secluding students hundreds of times after previously not reporting any cases to the state and federal governments.

Data presented late last month shows that there were 864 acts reported between July and December 2023 when Wake school employees either restrained a student or secluded them in a locked room away from other people. It’s a figure that school administrators said is too high.

“We are committed to clear and accurate reporting and improving our systems to support the reduction of seclusion and restraint incidents,” Jill McKenna, assistant superintendent for special education services, told the school board’s student achievement committee.

McKenna said the district has known for years that there are concerns about how the seclusion and restraint data has been reported in North Carolina’s largest school district.

Last August, Wake agreed to pay $450,000 to a family who said their elementary school child with a disability was confined in a closet more than 20 times. As part of the lawsuit settlement, Wake agreed to make multiple changes in how it handles and reports case of restraint and seclusion.

Wake settled another lawsuit in 2020 when it agreed to pay $450,000 to the family of a high school special education student who said he was illegally physically restrained and secluded.

Schools can restrain students and seclude them in another room for several reasons, such as stopping a fight or preventing injury to themselves or others, according to Disability Rights North Carolina. But the group says schools can’t use the practice solely for disciplinary reasons.

Cases of restraint and seclusion are supposed to be reported to the state Department of Public Instruction and the U.S. Department of Education.

But Wake hadn’t reported any cases of restraint and seclusion to the federal government in the 2017-2018 school year.


Pennsylvania - How a PA Prison is Finding Solutions to the Unique ChallengesPrisoners with Developmental Disabilities Face 

By Claudia Lauer, NBC10 Philadelphia, March 3, 2024

An Erie County prison unit is helping men with autism and other intellectual and developmental disabilities stay safe behind bars while learning life skills

“You are the Lighthouse in someone’s storm,” reads the message above a mural of a sailboat bobbing on ocean waves under a cloud-studded azure sky. It's an unexpected slogan for a prison wall.

On a nearby door painted deep blue, a bright yellow Minion character offers “Ways to say hello,” lists of suggestions about how prisoners incarcerated in a segregated unit of Pennsylvania’s State Correctional Institution at Albion can best greet each other. A handful of “sensory” rooms in the unit offer calming blue walls where harsh fluorescent lighting is dimmed by special covers.

The unique environment is part of a program aimed at providing better serving prisoners with intellectual or developmental disabilities, a growing population that has presented a challenge for corrections officials as they try to balance the need for security with accommodations, according to experts.

Such prisoners often struggle with overstimulation, inflexibility and trouble with complex directions, resulting in strong reactions that can lead to further discipline. They also grapple with social boundaries, making them more vulnerable to abuse, violence or manipulation in prison, said Steven Soliwoda, creator of Albion's Neurodevelopmental Residential Treatment Unit.

In a regular prison setting, many of these prisoners with autism and similar disabilities “would normally have kind of gotten through their incarceration just quietly," said Soliwoda, who is also program manager at Albion. "Maybe they would have been a recluse or spent a lot of time in their cell. But their voices are heard in the program and they develop that independence and the social skills they need to survive when they get out of here.”

There is no comprehensive count of how many prisoners in the U.S. have autism or intellectual disabilities, though some studies estimate more than 4% are autistic and almost 25% reported having cognitive impairments, according to the U.S. Bureau of Justice Statistics — nearly twice the rate of each in the overall population. Many advocates believe the number could be much higher because of underdiagnosis before prison or because of ineffectual or nonexistent screening at some corrections departments.


Nevada - State Launches Committee to Review Deaths of Vulnerable Adults

By Michael Lyle, Nevada Current, March 7, 2024 

In an attempt to uncover policy gaps that might have contributed to the death of people with physical and mental disabilities, the state recently began a committee to review fatalities of vulnerable adults.

The findings are expected to highlight systemic barriers and recommend policy changes, but the committee won’t be investigating care facilities or individuals for criminal activity, said Michael Morton, a special assistant with the Nevada Attorney General’s office who also chairs the review committee.

While reviewing cases of suspected maltreatment, the committee’s charge is to look for “statutory, legislative or policy gaps” that could be putting people at risk, Morton said. 

Assembly Bill 119, which was passed during the 2023 Legislative Session, established the Vulnerable Adult Fatality Review Committee.

A “vulnerable person,” as defined by state law, is someone 18 or older who suffers from a physical or mental development disability or mental illness or a person who has “one or more physical or mental limitations that restrict the ability of the person to perform the normal activities of daily life.”

“If there is suspicion there is maltreatment, the committee would study those fatalities so we better understand the causes of these deaths and how to reduce them,” said David Orentlicher during the bill hearing in 2023.

Orentlicher said the state already has fatality review committees for domestic violence, children and maternal mortality. 

Cases can be referred to members by social workers and law enforcement or the Aging and Disability Division, which is part of the Nevada Department of Health and Human Services and oversees programs for Nevadans with disabilities or special health care needs. 


The Proposals to Whittle Down a 10-Year Waitlist for Kansans with Intellectual Disabilities

By Blaise Mesa, The Kansas City Beacon, March 7, 2024


  • Parents of children with intellectual disabilities need additional support, but the wait for state subsidies can take 10 years.
  • Gov. Laura Kelly wants to allocate $23 million to assist 500 families on disability waivers. Republicans are proposing double that. 
  • A proposed community support waiver in Kansas aims to alleviate the waitlist by offering alternative services, but that solution is years away.

Caring for a child with an intellectual or developmental disability is a 24/7 responsibility for parents. 

A child with autism, for example, can be easily frustrated by minor changes, can hyperfixate on things and can feel particularly dependent on certain routines. That can overwhelm already stressed and worn-down parents. 

Kansas has money to help such families with overnight respite care, wellness monitoring and other in-home services. But families wait an average of 10 years to qualify. That’s so long that kids have aged out of support before ever getting it. 

The state is trying to reduce the wait times for families to receive the waivers that provide these services. Gov. Laura Kelly added $23 million to her budget proposal to create 500 more slots on the intellectual/developmental disability waiver and the physical disability waiver. 

Kelly’s proposed $23 million has $8.8 million in Kansas taxpayer dollars and $14.1 million in other revenue sources to increase enrollment slots. The Republican plan has a $33.9 million price tag, with $13.6 million in Kansas dollars and $20.3 million in other revenue to physicians to increase rates for services. It also includes $17.9 million in general funds and $27.3 million to increase outpatient hospital rates. 

Kelly estimates her plan will add 250 slots to the I/DD waiver and 250 slots to the physical disability waiver. Republicans said their plan will help twice as many people as Kelly’s — yet both proposals don’t go far enough for some advocates.

“The state has been starving the waiting list, and that’s why it’s skyrocketing at this point,” said Rocky Nichols, executive director of the Disability Rights Center of Kansas.

Since 2017, the Legislature has approved less than $10 million overall for both the physical disability and I/DD waivers. However, it’s spent more than $200 million to adjust rates for those services since 2020. 

That’s where one divide comes in: Nichols said helping providers earn more doesn’t get people off the waitlist, but state lawmakers say they needed to start there to stabilize staffing and pay. 

“You can talk all day long about taking folks off the waitlist,” said Rep. Will Carpenter, an El Dorado Republican. “But if they can’t access services, you’ve done nothing.” 

Carpenter is pushing hard to double Kelly’s proposal and he sees legislative support behind him. He wants to get people off the waitlist, especially since a proposed solution to the waitlist is still years away. 

Kansas is trying to create a community support waiver. It first needs federal permission, something likely to take years. 

That proposed community support program wouldn’t replace the I/DD waiver. Instead it’s going to supplement it and offer families waiting for help a chance to get it earlier. It doesn’t offer the most intensive services, but not everyone needs those. 

Carpenter hopes it will remove half the people from the current waitlist. He’s currently taking a “wait and see” approach to the new waiver because it could be more effective than some think it can be.

Families know how bad the waitlist is and they know they won’t get help if they apply for it when they need it. That leads to some families applying to the waitlist early before they need support, Carpenter said. He estimates there could be around 1,000 families on the waitlist now that don’t need help yet. 

Read the full article here

Care At Home:

Connecticut - Lamont Negotiates Big Pay Hike for CT Home Health Aides

Wages would rise nearly 26% by 2025-26 to $23 per hour

By Keith M. Phaneuf, CT Mirror, March 5, 2024

Gov. Ned Lamont and Connecticut’s largest health care workers union announced a tentative three-year contract Tuesday that would boost minimum wages for home health aides by 26% to $23 per hour by the 2025-26 fiscal year.

But the package, which also would provide longevity bonuses, expand paid time off and reduce health insurance costs for an industry long seeking a major compensation adjustment, puts the General Assembly in a quandary.  

Legislators, who now must decide whether to ratify the package, face a similar request for funding from the private, nonprofit social services industry. But there also are restraints limiting state finances, despite projections for another healthy budget surplus.

“This historic agreement shows our commitment to address the worker shortages experienced by some of Connecticut’s most vulnerable Medicaid participants,” Lamont said Tuesday. “It will ensure consumers’ preference to receive care in their own home and community for as long as possible and helps delay or avoid more costly institutional care.”

The tentative contract would affect roughly 11,900 personal care assistants serving about 6,000 low-income clients served by Medicaid, a federal program run in cooperation with states. Though these workers are paid through a fiscal intermediary, Connecticut covers their compensation through a combination of state and federal funds.

About 80% of these PCAs earn $18.25 per hour, the starting wage under the outgoing contract, according to SEIU 1199NE, New England Health Care Employees Union. Others with significant experience, or if serving a client with developmental disabilities, earn a slightly higher rate.


Nebraska Department of Health and Human Services Offers New Waiver for Developmentally Disabled Children

By Andrew Ozaki, KETV Omaha, March 4, 2024

A "game changer" and "transformative" — that's the way state officials and advocates for children with developmental disabilities describe a new Medicaid waiver.

Beginning this week, the Nebraska Department of Health and Human Services will start notifying 850 families currently on the Developmental Disabilities waitlist they are eligible for the new Family Support Waiver.

It helps children with intellectual or developmental disabilities live at home.

"This announcement is huge for Nebraska," said DHHS's Director of the Division of Developmental Disabilities Tony Green.

It will allow the child to access Medicaid and also provide the family up to $10,000 a year for other expenses.

"This waiver will provide children from birth to 21 an opportunity to get in-home services while they are still living in their family home waiting to get some of those larger waivers," Green said.

"I am just ecstatic," said Edison McDonald, the executive director of the ARC of Nebraska. "That could help with all sorts of expenses from adaptive technology to child day habilitation of services. It also is going to mean that they're going to have access to physical therapy, occupational therapy, speech therapy."

McDonald said that currently there is a waiting list of around 2,000 Nebraskans for those services and that can take up to eight years.

"It's horrific to have families call you who are desperate and in need because their child needs medical care," McDonald said.

The program is made possible through a bill passed last year sponsored by state Sen. Machaela Cavanaugh.

It called for $2 million a year in state funds. That allows the DHHS to access another $10 million in federal funds and $6 million in federal ARPA funds.

"With little actions now, we can create tremendous cost savings down the line that can add up to over $100,000 of savings per kid," McDonald said.

Green said the pathway to Medicaid eligibility is significant for families. Of the 850 families, 500 currently don't qualify for Medicaid.


Paid Family Caregivers in Indiana Face Steep Cutbacks

Now that federal pandemic-era funds are shrinking, states like Indiana are ending or curtailing programs that finance home care by relatives of seriously ill children and adults.

By Ted Alcorn, The New York Times, March 4, 2024

 Kacey Poynter doesn’t have to commute far to clock in for work. She’s a paid caregiver and simply rolls out of bed to tend to her charge: her 2-year-old son, who sleeps in a portable playpen right beside her.

Sonny was born with a congenital malformation that impaired his brain development and needs near continuous care simply to breathe and eat. Ms. Poynter left her job at a call center when she brought him home from the hospital and has nursed him ever since rather than relying on aides or institutions. Indiana’s Medicaid program has paid her for this labor of love.

“It’s just been honestly life-changing, being able to be here with him and not worry about someone else trying to take care of him,” she said.

But her ability to keep looking after him is now in doubt. Indiana’s social services agency has announced plans to end the caregiver program, citing a nearly $1 billion shortfall in the state Medicaid budget. By July 1, parents and guardians caring for children and spouses caring for their partners would have to enroll in a different program for far less pay.

The fear, for people like Ms. Poynter, is that they will have no option but to return to work and search for home care help in the midst of a deepening national labor shortage of aides and nurses.

During the coronavirus pandemic, states received a huge infusion of federal money — money that’s now drying up, leaving Indiana, and many other states, facing tough choices about how to plug the gaping holes in their budgets.

Panicked Indiana parents who rely on the payments have held weekly rallies at the Statehouse, some toting their children. With the state legislative session ending as early as Friday, it’s unclear how the proposed cutbacks will play out.


VOR Bill Watch:

[Please click on blue link to view information about the bill]


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.

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.

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.


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.


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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