June 28, 2024

VOR's Weekly News Update

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run by families of people with I/DD and autism

for families of people with I/DD and autism.

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Glenwood Resource Center Closes

'I'm very angry': Families feel both loss and frustration over troubled Glenwood's closing

By Micaela Ramm, Des Moines Register, June 20, 2024


Before Kristin Higgins died, her mother took her to say goodbye to the place she had called home for most of her life.


Joy Higgins put her daughter in a wheelchair, and they walked across the Glenwood Resource Center campus, passing by the three homes she had lived in during her 30 years at the state-run institution for people with severe intellectual and developmental disabilities.


A year earlier, in 2022, the state had announced plans to shut down the state-run institution in southwest Iowa, catching many families, including the Higginses, by surprise. Kristin Higgins suffered from severe brain damage after she was born prematurely, and Glenwood had been her home since she was 10 years old.


During that unseasonably warm fall day in 2023, Kristin and Joy Higgins went past the home where Kristin first learned to eat by mouth and discovered a love of Cheetos. They walked past another home where Kristin's ornery personality grew, and where she developed close friendships with other women living there.


Kristin Higgins died last month after multiple bouts of COVID-19 and aspiration pneumonia, shortly after she was moved out of Glenwood. She was 41.


As Higgins reflects on the day she pushed her daughter around the campus, she said it almost felt like saying goodbye — both to her daughter and to the place that helped her thrive.


"I was just grateful for the place," said Higgins of Council Bluffs. "I honestly don’t know what I would have done, and I don’t know what she would have done if we hadn’t had that. I was just sad because there’s a grief process when they close the place for people to live. It’s a loss."


But she also feels a lot of anger about a home that was taken away from her daughter. It’s a sentiment shared by other families of Glenwood residents who spoke to the Register ahead of the center's closure this month.


The last residents of Glenwood were being moved out this week, one of the final steps before state officials shutter the institution. With it, the state officially closes a controversial chapter in its history, but it also marks a pivotal turning point in Iowa's approach to caring for people with severe disabilities.


Many of the former residents had lived in the facility several years; some even for decades. Their families say they received good care at the public institution from qualified staff, and without that, they worry for their loved ones' health and safety.


Their concerns have been punctuated by data showing that 14 people died within one year of their new placement outside of Glenwood, according to information obtained by the Register through an open records request.


Most of the former Glenwood residents have been moved to smaller, community-based residences, such as group homes.


“I’m very angry,” Higgins said. “Certain people think everybody should be in the community. Those of us that don’t feel that way don’t matter.”


Though state officials say individuals with disabilities are more likely to have better long-term outcomes in community-based settings, families of former Glenwood residents have pointed to recent deaths to highlight their concerns.


Of the 14 individuals who died within one year of their new placement outside of Glenwood, three occurred at the resident's community placement, HHS data shows.


The remaining 11 individuals died while in hospice care, including five who were transferred there directly from Glenwood. Another six entered hospice care after they were placed in the community or at Woodward Resource Center, the state's other publicly managed institution.


In addition, five residents died before they were moved to a new placement outside of Glenwood, according to HHS data.


The average age of the individuals who died either before placement or after leaving Glenwood is 64, according to HHS officials. Their causes of death include cancer, respiratory conditions and cardiac arrest, as well as other chronic illnesses.


In total, 147 residents will have been moved out of Glenwood by the time it officially closes June 30, according to HHS data.


That includes 26 individuals who have been moved to Woodward Resource Center in central Iowa. Another eight people are in an intermediate care facility, which is a group living facility for those with intellectual disabilities.


The majority — 83 individuals — have been moved into home- and community-based services, a federally designated setting that includes a range of medical and social services to support those with disabilities living in the community.


In addition, 17 individuals have been placed in host homes, some of which were opened by former Glenwood staff, Garcia said.

Seth Finken, 45, is one of the six former Glenwood residents who have since moved into a nursing home after living at the institution for 40 years. He suffered severe brain damage from meningitis as a baby, leaving him deaf, blind and nonverbal.


His mother, Sybil Finken of Glenwood, said her son now lives in Glen Haven Village, a nursing home in Glenwood that leases buildings on the institution's campus. The facility has provided him with good care over the past year, but the transition has been hard on Seth, she said.


Sybil Finken believes the state should not have closed Glenwood, which she said provided her son with good care for many years. Just as hospitals need intensive care units, she said institutions are necessary for Iowans like Seth with severe disabilities.


“It’s a helpless feeling," Sybil Finken said. "It has been from the beginning. You take 150 of the most vulnerable Iowans and evict them, and you take 500-600 Iowa employees and take away their jobs. There’s nothing about that, in my mind, that’s positive other than saving the state of Iowa a few bucks.”


Read the full article here

National & State News:

Editorial: The criminal legal system is failing people with intellectual disabilities

By Katie Kronick, The Baltimore Sun, June 28, 2024


Last month, a Baltimore County judge ordered the Maryland Department of Health to pay over $600,000 for its failure to meet the needs of people in the criminal legal system who have intellectual disability and severe mental illness. Even though the law requires transfer to an appropriate treatment facility within 10 days of a court order, people with significant needs are waiting nearly half a year in jail without meaningful care.


It’s shameful that we have never truly moved away from incarcerating the most vulnerable among us. We need to find ways to decrease their presence in the criminal legal system—one disproportionately targeted group that we are failing is people with intellectual disability.


The American Association of Intellectual and Developmental Disabilities defines intellectual disability as “significant limitations in both intellectual functioning and adaptive behavior that originates before the age of 22.” Intellectual disability can look different depending on the person and the severity can range from profound (generally an IQ below 20) to mild (generally an IQ between 50 and 69). A person with intellectual disability often struggles with everyday tasks like keeping a job, maintaining personal hygiene, and literacy. Though a person with intellectual disability could also have other conditions such as mental illness or physical challenges, those are distinct.


During the COVID-19 pandemic, a colleague and I represented a client with intellectual disability seeking compassionate release. Not only did COVID-19 pose an increased threat because of health conditions, but he also had an unrelated medical issue that he struggled to manage due to deficits in working memory. The prison did nothing to help him, resulting in more than one hospitalization.


The slowed-down pace of the pandemic allowed us to understand the great impact intellectual disability had on his offense, sentencing and the challenges he faced in prison. We were able to use our increased understanding to advocate with the court, and he is now home with his family, successfully living in the community with appropriate supports. That experience made me reflect on my years as a public defender and the many clients who likely had intellectual disability, which I failed to recognize.


People with intellectual disability are more likely than their peers to become ensnared in the criminal legal system — not because they are more prone to criminal behavior, but due to environmental and social factors that make them more likely to be arrested and prosecuted. For example, they may engage in behavior that they are unaware is illegal. In addition, because of a desire to please authority figures, they are more likely to falsely confess to crimes.


Once in the system, they fare worse: they are more likely to be held in jail awaiting trial, offered worse plea deals, and sentenced to longer periods of incarceration. And once incarcerated, they are more likely to be targets of abuse from inmates and prison staff and often serve more time before getting paroled due to a lack of tailored programming.


These negative outcomes stem from systemic problems in the criminal legal system.

Due to their crushing caseloads, even the most committed public defenders often fail to identify clients with intellectual disability. If identified, they may lack the resources to provide proper support.


On the other side of the coin, judges and prosecutors frequently misinterpret behaviors associated with intellectual disability as signs of indifference or guilt. For instance, a person with intellectual disability might miss court dates due to struggles with working memory, leading a judge to order pretrial incarceration.

As a result, people with intellectual disability often receive harsher punishments. Some judges, upon learning of a defendant’s intellectual disability, even impose longer sentences.


This does not enhance public safety and contradicts the principles of justice. These individuals are not more likely to commit crimes. They are, however, less likely to get appropriate rehabilitative services while incarcerated, and prison sentences are unlikely to deter future offenses.


Continued

Related Story:

Long wait for Texas mental health beds means extra months in jail   

By Miranda Suarez, KERA / via KETR Public Radio, June 25, 2024


During his six months in the Tarrant County Jail, Kai’Yere Campbell kept asking his mom, “Am I going home?”


For a long time, Shantel Taylor didn’t have an answer for him.


Campbell is intellectually and developmentally disabled, according to Taylor, and a schizophrenia diagnosis in 2021 added another challenge. At 21, he can't remember phone numbers, addresses or the year he graduated high school.


“He’s functioning on a childlike level,” Taylor said.


A court declared Campbell incompetent to stand trial, meaning he could not understand the charges against him or participate in his own defense. A judge ordered him to a state mental health facility.


The wait times for a bed in a state mental health facility can stretch months or even years. After being ordered to one, people have to wait behind bars, and their cases can’t move forward.


People with disabilities like Campbell’s have a long road ahead of them, said Beth Mitchell, an attorney and litigation coordinator for Disability Rights Texas.


"They’re the most vulnerable population of individuals found incompetent to stand trial,” she said. “And they're the ones who will remain on the list the longest.” 


Campbell behind bars

Campbell was living at a group home when he was arrested in December. He allegedly assaulted a group home worker, according to the Tarrant County Sheriff's Office, and he's been charged with injury to an elderly person. 


Taylor said her son was having an "episode" and group home staff wanted him taken to the hospital, not jail.


KERA reached out to the Fort Worth Police Department (FWPD), asking for their account of the arrest and for an interview about when they decide to make arrests at group homes.


Officer Daniel Segura, a FWPD spokesperson, did not respond to the request for an interview. He confirmed Campbell was picked up for injury to an elderly person but did not give details about the circumstances of his arrest.


Two months later, the court declared Campbell incompetent to stand trial. That kicked off the competency restoration process — a court-ordered course of treatment designed to make sure someone can be prosecuted while understanding the charges against them.


People often have to complete the competency restoration process at a state psychiatric hospital. Some can also go to a state supported living center, a state-run facility for people with intellectual and developmental disabilities (IDD) who have behavioral issues.


Her son’s involvement in the competency restoration process seemed futile to Taylor, who couldn't imagine Campbell ever being able to participate in his own defense.


"What is the point in putting him on a waitlist to restore competency when he's not going to retain any information?” she said. “He's going to sit there and hallucinate the entire time.”


In May, the fifth month of his incarceration, Taylor said Campbell was suffering. On visits, she noticed he'd lost a significant amount of weight. Campbell was digging into his skin, leaving sores on his back, arm and head, she said.


Continued

Related Story:

US Judge Finds California in Contempt Over Prison Mental Health Staffing

By Don Thompson, California Healthline, June 26,2024


A federal judge has found top California prison officials in civil contempt for failing to hire enough mental health professionals to adequately treat tens of thousands of incarcerated people with serious mental disorders.


Chief U.S. District Judge Kimberly Mueller on June 25 ordered the state to pay $112 million in fines at a time when the state is trying to close a multibillion-dollar budget deficit. The fines have been accumulating since April 2023, after Mueller said she was fed up with the state prison system’s inadequate staffing despite years of court orders demanding that the state address the issue.


“The sanctions imposed here are necessary to sharpen that focus and magnify defendants’ sense of urgency to finally achieve a lasting remedy for chronic mental health understaffing in the state’s prison system,” Mueller said in her order in the long-running class-action lawsuit.


The ongoing harm “caused by these high vacancy rates is as clear today as it was thirty years ago and the harm persists despite multiple court orders requiring defendants to reduce those rates,” she added.

Mueller ordered the state to pay the fines within 30 days and said they “will be used exclusively for steps necessary to come into compliance with the court’s staffing orders.” She ordered California to keep paying additional fines for each month the state remains in violation of court orders.


Continued

Medicaid for Millions in America Hinges on Deloitte-Run Systems Plagued by Errors

By Rachana Pradhan and Samantha Liss, KFF Health News, June 24, 2024


Deloitte, a global consultancy that reported revenue last year of $65 billion, pulls in billions of dollars from states and the federal government for supplying technology it says will modernize Medicaid.


The company promotes itself as the industry leader in building sophisticated and efficient systems for states that, among other things, screen who is eligible for Medicaid. However, a KFF Health News investigation of eligibility systems found widespread problems.


The systems have generated incorrect notices to Medicaid beneficiaries, sent their paperwork to the wrong addresses, and been frozen for hours at a time, according to findings in state audits, allegations and declarations in court documents, and interviews. It can take months to fix problems, according to court documents from a lawsuit in federal court in Tennessee, company documents, and state agencies. Meanwhile, America’s poorest residents pay the price.


Deloitte dominates this important slice of government business: Twenty-five states have awarded it eligibility systems contracts — with 53 million Medicaid enrollees in those states as of April 1, 2023, when the unwinding of pandemic protections began, according to the Centers for Medicare & Medicaid Services. Deloitte’s contracts are worth at least $5 billion, according to a KFF Health News review of government contracts, in which Deloitte commits to design, develop, implement, or operate state systems.


State officials work hand in glove with Deloitte behind closed doors to translate policy choices into computer code that forms the backbone of eligibility systems. When things go wrong, it can be difficult to know who’s at fault, according to attorneys, consumer advocates, and union workers. Sometimes it takes a lawsuit to pull back the curtain.


Medicaid beneficiaries bear the brunt of system errors, said Steve Catanese, president of Service Employees International Union Local 668 in Pennsylvania. The union chapter represents roughly 19,000 employees — including government caseworkers who troubleshoot problems for recipients of safety-net benefits such as health coverage and cash assistance for food.


“Are you hungry? Wait. You sick? Wait,” he said. “Delays can kill people.”


Advocates worry many lost coverage despite being eligible. A KFF survey of adults disenrolled from Medicaid during the first year of the unwinding found that nearly 1 in 4 adults who were removed are now uninsured. Nearly half who were removed were able to reenroll, the survey showed, suggesting they should not have been dropped in the first place.


Deloitte’s contracts with states regularly cost hundreds of millions of dollars, and the federal government pays the bulk of the cost.


“States become very dependent on the consultant for operating complex systems of all kinds” to do government business, said Michael Shaub, an accounting professor at Texas A&M University.


Georgia’s contract with Deloitte to build and maintain its system for health and social service programs, inked in 2014, as of January 2023 was worth $528 million. This January, state officials wrote in an assessment obtained by KFF Health News that its eligibility system “lacks flexibility and adaptability, limiting Georgia’s ability to serve its customers efficiently, improve the customer and worker experience across all programs, ensure data security, reduce benefit errors and fraud, and advance the state’s goal of streamlining eligibility.”


Trouble in Tennessee

When Medicaid eligibility systems fail, beneficiaries suffer the consequences.


DiJuana Davis had chronic anemia that required iron infusions. In 2019, the 39-year-old Nashville resident scheduled separate surgeries to prevent pregnancy and to remove the lining of her uterus, which could alleviate blood loss and ease her anemia.


Then Davis, a mom of five, received a shock: Her family’s Medicaid coverage had vanished. The hospital canceled the procedures, according to testimony in federal court in November.


Davis had kept her insurance for years without trouble. This time, Tennessee had just launched a new Deloitte-built eligibility system. It autofilled an incorrect address, where Davis had never lived, to send paperwork, an error that left her uninsured for nearly two months, according to an ongoing class-action lawsuit Davis and other beneficiaries filed against the state.


The lawsuit, which does not name Deloitte as a defendant, seeks to order Tennessee to restore coverage for those who wrongly lost it. Kimberly Hagan, Tennessee Medicaid’s director of member services, said in a court filing defending the state’s actions that many issues “reflect some unforeseen flaws or gaps” with the eligibility system and “some design errors.”


Hagan’s legal declaration in 2020 gave a view of what went wrong: Davis lost coverage because of missteps by both Tennessee and Deloitte during what’s known as the “conversion process,” when eligibility data was migrated to a new system.


Tennessee’s Medicaid agency, known as “TennCare, along with its vendor, Deloitte, designed rules to govern the logic of conversion,” Hagan said in the legal declaration. She also cited a “manual, keying error by a worker” made in 2017.


Davis’ family was “incorrectly merged with another family during conversion,” Hagan said.


Davis regained coverage, but before she could rebook the surgeries, she testified, she became pregnant and a serious complication emerged. In June 2020, Davis rushed to the hospital. A physician told her she had preeclampsia, a leading cause of maternal death. Labor was induced and her son was born prematurely.


“Preeclampsia can kill the mom. It can kill the baby. It can kill both of you,” she testified. “That’s like a death sentence.”


Read the full article here

Special Education Enrollment Hits All-Time High

By Shaun Heasley, Disability Scoop, June 25, 2024


There are a record number of students with disabilities in the nation’s schools.


New data shows that there were 7.5 million children ages 3 to 21 served under the Individuals with Disabilities Education Act during the 2022-2023 school year, accounting for 15% of all students. That’s a jump from 7.3 million the year prior and represents the highest number ever.


The figures come from an annual report known as the “Condition of Education,” which was released recently by the U.S. Department of Education’s National Center for Education Statistics. The document provides a rundown of data on education in America.


Special education enrollment dipped slightly between the 2019–2020 and 2020–2021 school years, but grew through the pandemic, the report indicated.


By comparison, there were just 6.4 million students with disabilities during the 2012–2013 year when 13% of schoolchildren were served under IDEA.


Even with the growth, the report notes that special education enrollment varies significantly across the states. At the high end, 21% of students have individualized education programs, or IEPs, in Pennsylvania, New York and Maine. Meanwhile, just 12% of students in Idaho and Hawaii receive IDEA services. Rates in other states fall somewhere in between.


Continued

Related Story:

CT Child Advocate alleges discrimination by four school districts related to High Roads report  

By Jessicka Harkay, CT Mirror / via Hartford Courant, June 26, 2024


Months after releasing a report regarding an investigation into an “alarming lack of oversight” of one of the largest special education program providers in Connecticut, the Office of the Child Advocate and Disability Rights Connecticut have filed a related complaint with the U.S. Department of Justice alleging disability discrimination.


The complaint alleges several federal special education laws were violated by four school districts — Hartford, Bridgeport, Waterbury and Stratford.


These districts are among those in the state that send their special needs students to High Road Schools, which is described by the groups as a “private equity owned, state-approved, and publicly funded private special education program” that serves students with disabilities who may need more individualized attention or require more high-need services than a traditional public school setting can offer.


The complaint follows a two-year investigation and report about High Road Schools that claimed that hundreds of Connecticut special education students who have attended these schools, which are located in Hartford, New London, Wallingford and other towns, have been “grossly underserved in both educational planning and service delivery.”


The investigation found that students with disabilities, particularly low-income children from Black and Latino communities, were “routinely placed by the districts at the segregated High Road Schools where they receive substandard and unequal education from often unqualified staff, are regularly subject to seclusion and restraint, and often have no pathway to returning to their home schools and districts,” a news release from the state’s Office of the Child Advocate said.


Sarah Eagan, the state’s child advocate, said the issues “gave rise to concerns of civil rights violations” and that her office didn’t hear back from most districts about how they were planning to “remedy the situation.”


“There are still hundreds of students in a program that just a few months ago we found was not complying with state laws and where children are being, in general, poorly served,” Eagan said. “It’s certainly concerning. … One of the major concerns we reported on was a lack of oversight for what was happening to kids, both by the school districts and, frankly, by the state Department of Education.”


Continued

Related Story (from Canada):

'Total inclusion isn't necessarily best for everybody': families worry about spec ed classroom closures, reviews

By Sneh Duggal, The Trillium, June 24, 2024


Adrianna Atkins said she was "devastated" after her son's principal informed her less than two weeks ago that the self-contained special education classroom he was in would be closed come September.


The closure would mean that 9-year-old Marshall — who has severe autism, ADHD and epilepsy, is non-verbal and elopes — would be moved into a regular classroom.


"I got in my car and I had a very hard time driving, I didn't move for a little bit, it was a lot to take in," said Atkins, who lives in Hearst, a town more than 200 kilometres northwest of Timmins. Atkins said she was told it was unclear at the time what supports her son would get. 


She told the principal she didn't know if she could safely send him to school in the fall. Marshall constantly puts non-edible items in his mouth and has experienced seizures that left him non-responsive for three minutes. Atkins has also had to call 911 after Marshall ran away and was gone for 45 minutes. 


"I'm not going to be feeling that way either, so I just won't send him," said Atkins, who told The Trillium she was hopeful the District School Board Ontario North East would change course and she wouldn't have to quit her job as a personal support worker. She believed her son would require an educational assistant to be assigned to him for one-on-one support throughout the day. 


Atkins is one of several parents fighting against the closure or potential closure of special education classrooms across the province — with some of these being part of larger shakeups that school boards say is a move towards more "inclusive" environments.


But advocates and parents say when it comes to special needs, it's "not a one size fits all," and they're worried such moves could be a setback for students with disabilities and lead to them being excluded from schools more often if the proper supports aren't in place. They'd like to see the provincial government stepping in to ensure students with disabilities have access to these contained classrooms where needed and that students with special needs be provided more supports. 


For Atkins, she worries about both her son and the other students that will be in his class. 

"I don't know what they're going to do to allow my son to still be himself, but allow the other kids to have the opportunity to learn," she said. 


Continued

Ohio may end program that pays disabled people less than minimum wage

By Sydney Dawes, Dayton Daily News, June 27, 2024


In Ohio, thousands of people with disabilities are employed under programs that legally pay them below the federal minimum wage — most being paid less than $3.50 an hour.


Ohio lawmakers have proposed the phasing out of subminimum wage for people with disabilities, a practice that has been commonplace since the 1930s, and federal officials are reviewing the controversial program nationally.


This would impact organizations in Dayton, Springfield and Lebanon that participate in the federal program along with 45 other employers across Ohio.


Some day service providers who work with people who have disabilities say this change could eliminate opportunities for people seeking employment, while disability rights advocates are pushing for equal pay for equal work.


“This is a challenging topic,” said Pamela Combs, the superintendent of the Montgomery County Board of Developmental Disabilities Services. “We understand both points of view — that there are people who rightfully believe that everyone should be paid at least a minimum wage for their work. But then on the other hand, we do have our families and those that we serve who believe that employers will not employ people with developmental disabilities if they cannot meet competitive expectations.”


Section 14(c), which is a part of the Fair Labor Standards Act of 1938, permits employers to pay subminimum wages to workers whose disabilities impact their productivity for the specific work performed, but only if the employers hold a special certificate under the U.S. Department of Labor’s hours and wages division.


Community rehabilitation programs provide daytime services to individuals with disabilities and represent the vast majority of 14(c) employers, according to Disability Rights Ohio executive director Kerstin Sjoberg.


“These sheltered workshops aren’t a typical employer in the way that you would normally think about it: like a company that has a product that needs employees,” she said. “It’s a nonprofit that wants to help people with disabilities learn skills, get jobs.”


Read the full article here

New Jersey - State-of-the-art facility for adults with disabilities (video only)

New Jersey Spotlight News, June 26, 2024


A state-of-the-art facility that serves adults with intellectual and developmental disabilities has been opened in Paramus by New Concepts for Living. The nonprofit is offering a range of free services there, including therapeutic and recreational, through the support of the New Jersey Division of Developmental Disabilities.


View the story here

Information About Your State:

KU researchers highlight how $80.6 billion in federal spending supports individuals with intellectual and developmental disabilities nationwide


Link to the site


State Profiles for Intellectual and Developmental Disabilities (I/DD) Spending During Fiscal Years 1977-2021


Link to the site

VOR Bill Watch:

[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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