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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In Case of Emergency
The following article should serve as a reminder to our families that it's good to prepare for emergencies. The State of Florida issued the following alert in anticipation of Hurricane Debbie. As a nations, we have recently seen an uptick in unexpected catastrophes, including hurricanes, tornadoes, wildfires, torrential rainstorms and flooding, wildfires, earthquakes, leaks of toxic materials or industrial contaminants, and other natural and not-so-natural disasters.
We encourage families to contact officials in your state to see what registries and services are offered for loved ones who cannot speak for themselves or look after themselves in case of emergencies.
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Florida Health Department Prepares Special Needs Shelters As Tropical Depression Four Approaches
By Matt Rife, Tampa Free Press, August 4, 2024
In anticipation of Tropical Depression Four's potential impact on Florida, the Florida Department of Health is activating special needs shelters in areas expected to be affected by the storm. These shelters cater to individuals with disabilities or medical conditions that require assistance but not hospitalization.
Residents are urged to pre-register for these shelters through the Florida Special Needs Registry. This online platform allows local emergency management officials to quickly identify and assist those who may need additional support during an evacuation or shelter stay.
To register, visit the Florida Special Needs Registry website and either log in with an existing account or create a new one. After registering, individuals will receive further information from their local emergency management agency regarding evacuation and sheltering options.
Those eligible for special needs shelters should prepare a kit containing:
・List of medications and dosages
・30-day supply of medications
・Vital medical equipment (for those electrically or oxygen dependent)
・Backup energy sources for medical equipment
・Special dietary needs or food
・Personal information (photo ID, insurance card, emergency contacts, primary care provider's contact information)
By pre-registering and preparing these kits, individuals with special needs can ensure they receive the necessary support and care during this potential weather emergency. For further information, contact your county's emergency management office or visit the Florida Special Needs Registry website.
Click here to link to the article
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This Week's News - No Safety Net: | |
Students with Disabilities Arrested and Referred to Police at More Than Double the Rate of Students without Disabilities
By Callie Oettinger, Sepaicl Education Actiion, August 7, 2024
A new report from Government Accountability Office (GAO) details the findings of GAO's investigation of U.S. Department of Education (USDOE) Office for Civil Rights' (OCR) Civil Rights Data Collection (CRDC) for the 2017–18 school year and of GAO's investigation of the School Survey on Crime and Safety. In addition, GAO used data collected by the U.S. Department of Justice (USDOJ).
Findings
Students with IEPs or 504 Plans were arrested and referred to police at significantly higher rates than their peers.
- For students with IEPs, the rate was more than double that for students who don't have disabilities.
- For students with 504 Plans, the rate was 1.5 times the rate of those who don't have disabilities.
Boys who have disabilities were arrested at the highest rate.
- Boys who have disabilities were arrested and referred at a higher rate than girls who have disabilities and at a higher rate than both girls and boys who don't have disabilities.
Native Hawaiian/Pacific Islander, Black, and American Indian/Alaska Native boys who have disabilities were arrested at the highest rates.
- Native Hawaiian/Pacific Islander, Black, and American Indian/Alaska Native boys who have IEPs were arrested at the highest rate.
The arrest rate in schools with a police officer present at least once a week is more than double the rate of similar schools without a police presence.
- This remained the case both before and after COVID impacted school operations and student attendance nationwide.
The referral rate in schools with a police officer present at least once a week is 1.37 times the rate of similar schools without a police presence.
- \This remained the case both before and after COVID impacted school operations and student attendance nationwide.
Continued
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Virginia - 'The Best Option': State Announces Plans to Close Hiram W. Davis Medical Center by 2027
By Bill Atkinson, Petersburg Progress-Index, August 9, 2024
The state Department of Behavioral Health and Developmental Services said Friday it plans to close the Hiram W. Davis Medical Center in Dinwiddie County by 2027.
In announcing the closure of the 50-year-old health center, DBHDS said all its systems “are nearing or have exceeded the end of their estimated life.” Additionally, the building’s design is not conducive to phased renovations, meaning that staff, residents and services would have to be relocated for up to two years while the work is done.
The Virginia Department of Behavioral Health and Developmental Services (DBHDS) announced today that they are beginning the process of closing Hiram W. Davis Medical Center (HDMC) in Petersburg. HDMC has provided acute medical, skilled nursing, and long-term care services primarily to Virginians in other DBHDS facilities who need medical care.
“Given its current state, which requires extensive repairs and renovations to maintain the highest level of care, closing the center is the best option,” DBHDS commissioner Dr. Nelson Smith said in a statement.
Davis Medical Center, located on U.S. Route 1 adjacent to Cental State Hospital, offers medical services, nursing and long-term care to patients in other state mental-health hospitals. As of Aug. 6, only 46 of the total 94 beds in the center were occupied.
DBHDS chief medical officer Dr. Alexis Aplasca said due to the “complex medical needs” of Davis patients, it was necessary to start the closure process now to meet the goal of 2027.
“We understand closing HDMC will have an impact on those we serve, staff, the local community, and our larger system of services,” Aplasca said in the statement. “As a result, the process of closing HDMC will be gradual.”
Since it opened in 1974, Davis Medical Center has not undergone any renovations, DBHDS said.
Smith said DBHDS will work with patients’ families on optimal discharge options and "maintain open communication” with current Davis staff about job opportunities elsewhere in the department.
“The health, safety, and well-being of the patients and staff of HDMC remains our top priority,” Smith said.
No date was given for when DBHDS plans to begin shutting down the center.
State legislators representing the area around the hospital reacted to the news not with shock but more with disappointment that Davis Medical had been allowed to reach its current conditions.
Read the full article here
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Kentucky - Waiver Wait List Growing, Swallowing Hope for Parents of Special Needs Kids
By John Boel, WAVE, August 5, 2024
In the Commonwealth of Kentucky, parents of children with special needs because of severe health conditions are supposed to get help if they are granted what’s called a “waiver.”
Waivers get them access to Kentucky Medicaid programs that help with a wide variety of care and living assistance.
In my last report on this subject, Jeremy Haydon qualified for all the waivers he supposedly needed for his son Andrew. He was then told he couldn’t get any specialty care in Kentucky unless he gave up his parental rights.
”So the answer to your inquiries was that you need to sign your child over to the state?” I asked.
“Correct,” Haydon said. “Just a feeling of loss and hopelessness and in a hole I didn’t know how to crawl back out of.”
Fortunately for Jeremy and Andrew their state representative made calls and got the state to enter into a special “single case agreement” that immediately provided everything Andrew needed. One case solved, but we’ve learned for thousands of other Kentucky families in similar circumstances it’s an entirely different kind of nightmare.
”Well I cried a lot,” Kimberly Hurt said. “You feel hopeless, like what am I going to do? What am I going to do?”
Hurt cried in hopelessness after learning she qualified for a waiver for state help with her daughter, who she says has severe autism, but the wait list for what’s called a “Michelle P waiver” is running eight to 10 years.
”You can call every year or so and check where you are on the list,” Hurt said. “I think there’s like 5,134 kids ahead of her when I checked, something like that. Especially for kids on the spectrum, early intervention is really important. You’re really trying to turn a ship, and the faster you get that turn going the better your long-term outcomes are going to be. So you really want to get this started as soon as possible, and they’re like ‘yeah we’re going to get you lots of help in a decade.”
That’s right. According to Sheila Schuster of the Advocacy Action Network, which tracks all this, the wait list for Michelle P waivers has grown from 8,398 in November 2023, to 9,212 in July 2024. The overall waitlist on Michelle P and other waivers for special needs kids has grown from 12,723 to 14,849 in the same time frame.
”If we’re going to move that waitlist, you’re talking big bucks,” Kentucky Youth Advocates Executive Director Dr. Terry Brooks said. “You’re talking about budget-bashing numbers there. It really comes down to what kind of value people place on supporting these folks.”
Brooks said the state budget isn’t about dollars. It’s about priorities.
”This is a very vulnerable population,” Brooks said. “So the question for the General Assembly and the question for the Governor, whether it’s Andy Beshear or whoever might follow him, is where do the needs of this population rate in your priorities? How does this compare to roads, or a battery plant, or other kinds of social issues?”
Kentucky’s legislature just tried to take a bite out of this by approving funding for an additional 250 Michelle P waivers this year and 500 more waivers next year. That doesn’t even keep up with how much the wait list has grown over the last eight months, however.
”But when you talk about 750 slots out of more than 9,000 you’re kind of spitting in the ocean,” Brooks said.
Brooks said if this issue touches your heart you should call your state rep or senator. He said they may not even know this situation exists. He said the billions of dollars we’re up to now in Kentucky’s rainy day fund can be spent for emergencies. And he believes this is an emergency.
Read the full article here
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Texas - Kingwood Family Ffears for Safety after Son with Autism, Epilepsy Waitlisted for Treatment Center
A Kingwood family is in fear for their safety while their son is waitlisted for a treatment center to help with intellectual and developmental disabilities.
Boarded up windows are an essential at Eileen Simonetty’s Kingwood home.
“My house is like a prison,” said Simonetty.
The arrangements are for her son, 33-year-old Christopher.
”He has profound autism, epilepsy, diabetes, anxiety disorder. When the epilepsy started in high school is when the behaviors became violent and out of control,” said Simonetty.
His violent behaviors picked up over the past year during a medicine change. She said her son has given her a black eye, bloody nose and bruises. Her husband and other family members have also been injured.
“We have to try to physically restrain him. We have to try to give him medication to calm him down,” said Simonetty.
Police have also struggled to detain Christopher, according to Simonetty.
“He’s assaulted two police officers, broke glasses on a police officer, had to be taken out in handcuffs. The state supported living center came out in November, evaluated him in the hospital and told me that they had a bed and he would be admitted,” said Simonetty.
Simonetty said she thought her son was going to be sent to the Richmond State Support Living Center. In February, she learned he was waitlisted. She said it is the only center that can treat his specific needs.
“They said it could take 12 to 18 months,” said Simonetty.
The Harris Center has been a liaison for the family as they wait. Through several email exchanges, Simonetty said she thought she had a glimmer of hope.
“On July 25th, they said they’re going to get to us early last week with a preadmission meeting,” said Simonetty.
Last week, she learned her son was still waitlisted. Now, she feels she has been getting the runaround from officials.
“He can be so good, and he can be very loving and sweet. And we love him. And making a decision to go to a state supported living center is a very difficult thing to do. I’m afraid, you know, it’s not easy when you have someone that is 230 pounds coming at you full force,” said Simonetty.
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Florida - ‘I Don’t Think He’ll Survive Prison’: Mother of 270-Pound Autistic Teen Sentenced for Brutal Assault Says He Paid the Price for Being a Big, Black Boy, After Judge Rejects Her Plea for House Arrest
By Jill Jordan Sieder, Atlanta Black Star, August 8, 2024
Brendan Depa, a 6-foot-6, 270-pound Black teenager who brutally assaulted a teacher’s aide in Florida last year, was sentenced to five years in state prison and 15 years of probation on Tuesday, despite the pleas of his adoptive mother to let him stay home and get treatment for his severe autism and other behavioral disorders.
The 18-year-old was facing up to 30 years in prison for aggravated battery against Joan Naydich, a paraprofessional at his high school in Palm Coast, whom he knocked unconscious, punched and kicked after she denied him access to a video game controller on Feb. 21, 2023. He pleaded no contest.
A shocking viral video of the attack quickly branded Depa a “monster schoolboy” and served as compelling evidence in the case that the state brought against him.
Naydich, 59, suffered five broken ribs, a herniated disk, a concussion and loss of hearing after Depa kicked and punched her 15 times. “Unfortunately, a lot of my injuries that are not visible I’m going to have for the rest of my life,” Naydich testified at the first of two sentencing hearings in May.
Naydich said that Depa became angry during a cybersecurity class after she asked another teacher to tell him to put away his Nintendo Switch because it was disruptive. He called Naydich “nasty names” and spit on her. She then left the classroom, and Depa followed her out into the hallway and assaulted her.
“Everything was taken away from me that morning,” she said. “I think Brendan should pay for what he did. There are consequences in life to bad actions, bad choices. He made the choice that day to come after me.”
At issue in the criminal prosecution against Depa was how great a role his autism spectrum disorder and behavioral disabilities played in the assault and whether or not he was mentally competent and capable of controlling himself.
Assistant State Attorney Melissa Clark argued that Depa had previously shown the ability to control himself with periods of good behavior at a group home.
“He almost killed a woman. He should be punished for that,” she said. "He pummeled an unconscious woman,” Clark said. “But for those five people pulling him off, I don’t think she would be here today.”
Depa’s lawyer initially argued he should be tried as a juvenile since he attacked Naydich when he was still 17. Clark disagreed, citing his history of violence. Judge Terence Perkins sided with Clark, saying Depa had numerous prior battery charges.
Clark asked for seven years of prison time for Depa, followed by a longer period of strict supervision.
In May, the state called Dr. Greg Prichard, a psychologist, who testified that Depa had been diagnosed with autism, intermittent explosive disorder, attention deficit hyperactivity disorder, and other disorders. He said that Depa was of average intelligence, with an IQ of 97, but dangerous.
In response to a query from defense attorney Kurt Tiefke, he said Depa’s attack on Naydich “very likely was a manifestation of his emotional behavioral disability and his tendency to overreact aggressively to perceived slights.”
“It sounds like we are here to determine what is the price to be paid for actions that are a result of a disability,” Tiefke said.
Both Anderton and Roger Davis, a court-appointed psychologist, testified that Depa posed a danger to himself and others and should be placed in a secure facility if the judge were to rule him incompetent.
Anderton said it was a “huge concern” that his isolation while incarcerated could make his autism worse.
Perkins ruled in June that Depa was mentally competent and the legal case against him could proceed.
At the sentencing hearing this week, Leanne Depa testified she had told the school about her son’s mental and emotional needs and vulnerabilities and about his history of violent outbursts.
In a separate legal claim against the Flagler County School Board in April, lawyers for Depa argued that the school district “failed this student before the incident occurred. The student’s disabilities, triggers and problem behaviors were well known,” and the district’s failure to address his needs “led to the violent incident with the paraprofessional.”
The complaint said that Depa’s family, who adopted him when he was 5 months old, has struggled to afford supportive care for him over the years. They could not find a private residential treatment facility in central Florida that also provided education. In 2021, they said, they were forced to enroll their son in Matanzas High School, a public school.
As federal law dictates, the school district created an IEP, or Individualized Education Plan, for Depa to address his special needs, including the academic and behavioral support services he required. But the school did not follow it, his attorneys and parents allege.
At his high school, over a two-year period, Depa got into fights with other students and school staff, incidents that included spitting, pushing, and threatening school staff. He was suspended from school several times, but the school district made no changes to his behavioral plan.
“The district failed to provide the direct instruction, supports and services to teach [Depa] how to not only function in the school setting but how to regulate his emotions, communicate his wants and needs,” the complaint stated.
Naydich, the paraprofessional assigned to support Depa in the school, had no special training to work with students with special needs, reported the Miami Herald.
Disability advocates say it’s common in Florida’s public school system for teacher’s aides who lack training in how to care for students with autism, impulse control issues and other special needs — including how to deescalate conflicts — to be put in charge of their care. This can lead to violent incidents like the one involving Depa and Naydich, said Ann Siegel of Disability Rights Florida, an advocacy group.
After sentencing Depa to serve five years in prison and 15 years of supervised probation upon release, he also ordered the Florida Department of Corrections to conduct a full mental health assessment of Depa and to create a plan to care for his disabilities while he’s incarcerated.
“They are punishing that he is Black, they are punishing that he is large, and they are punishing his disability,” Leanne Depa said after the hearing, according to the Daytona Beach News Journal.
“I think he needs help,” she said. “And I think he needs treatment, but I don’t think he needs to be put away in a prison where he’s going to be taken advantage of or harmed.”
Read the full story here
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Understanding the Fight to Protect People With Intellectual Disability From Execution
Press Release from The Arc, August 5, 2024
The Arc of the United States, along with our partners, recently filed an amicus brief in a critical case before the Texas Court of Criminal Appeals, Ex Parte Blaine Milam. This case highlights an ongoing issue in our criminal justice system: the unconstitutional execution of people with intellectual disability (ID).
Here’s what you need to know about this important fight for justice.
The Background
In 2002, the U.S. Supreme Court ruled in Atkins v. Virginia that executing people with ID violates the Eighth Amendment’s ban on cruel and unusual punishment. The Arc played a crucial role in this landmark decision, with our amicus brief cited by the Justices in support of their ruling. In Hall v. Florida (2014), the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts using clinical standards in their analysis. In Moore v. Texas (2017 and 2019), the Court strengthened this precedent by emphasizing the need to rely on well-established scientific standards in making ID determinations in death penalty cases. The Arc filed amicus briefs in Atkins, Hall, and Moore to educate the Court on the clinical diagnosis of ID and ensure that people with ID are protected from the death penalty.
Despite these decisions, courts around the country too often continue to rely on stereotypes rather than scientific standards when determining ID in death penalty cases. This results in wrongful death sentences and executions. At the same time, people with ID are overrepresented at all stages of the criminal justice system, including being arrested, charged with a crime, and serving longer prison sentences once convicted than people without disabilities.
The Current Case
The case in Texas involves Blaine Milam, a death row inmate with intellectual disability. Mr. Milam was only 20 years old when he received his sentence and was scheduled to be executed in early 2019. Following the Supreme Court’s decision in Moore v. Texas, the Texas Court of Criminal Appeals suspended his execution to determine if he met the definition of ID. The state’s initial expert concluded that Mr. Milam met the standard for an ID diagnosis, but the state later retained a new expert who disagreed. Despite Mr. Milam’s lawyers presenting reports from four medical experts on clinical errors in the evaluation done by the state’s new expert, that opinion was adopted, and the trial court decided to move forward with Mr. Milam’s execution. He is currently on death row.
Our amicus brief urges the court to rely on well-established clinical standards and Supreme Court precedent when determining ID, rather than outdated stereotypes.
Why This Matters
- Fair Treatment: People with ID are at a higher risk of wrongful convictions and death sentences. They may be more likely to falsely confess to a crime, struggle to understand their rights, and have difficulty working with their lawyers to prepare their own defense.
- Life or Death Stakes: In capital cases, an accurate determination of ID can literally mean life or death.
- Use of Clinical Standards: Under Atkins, states are constitutionally required to ensure that people with ID are not sentenced to death nor executed. Despite Supreme Court precedent, some states continue to rely on unscientific standards for determining and defining intellectual disability, leading to wrongful executions. While this case pertains to the death penalty, it’s critical that court decisions that impact the lives of people with disabilities are properly informed and considered and not relying on stereotypes and misinformation.
The Arc has deep sympathy for the family and friends of victims in this case and supports appropriate punishment of all responsible parties. However, it is critical that courts utilize clinical standards and abide by the Constitution. In Mr. Milam’s case, the State’s latter expert did not rely on clinical standards for diagnosing ID.
The Arc’s Position
People with intellectual and developmental disabilities (IDD) must receive justice in our criminal justice system. We advocate so that:
- All criminal justice personnel are knowledgeable and trained about IDD.
- People with IDD have access to necessary supports, accommodations, treatment, and education throughout legal proceedings.
- People with ID continue to be exempt from the death penalty.
- States use accurate, scientific procedures to determine ID in capital cases.
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From the Federal Register - Request for Comments on Possible Revision of Standard Occupational Classification for Direct Support Professionals for 2028
The Office of Management and Budget (OMB), on behalf of the Standard Occupational Classification Policy Committee (SOCPC), announces the review of the 2018 Standard Occupational Classification (SOC) Manual for potential revisions to be made for 2028 and solicits public comment. This review and possible revision of the 2018 SOC is intended to be completed by the beginning of 2027 and then released to begin use in reference year 2028.
While they did not specifically request information regarding Direct Support Professionals, we hope that our members will speak out in support of recognizing our caregivers and awarding them the classification of Health Care Professionals. Comments are due soon.
For more information, and to submit a comment, please click here.
VOR's comments may be found on our website, at www.vor.net
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[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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Please share this offer with your loved one's
Direct Support Professionals!
VOR ❤️s OUR
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
info@vor.net
with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.
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What's Happening In Your Community?
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