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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Please submit your state reports for
VOR's 2024 Annual Meeting
Sunday, June 23, 2024
3 pm - 6 pm ET / 2 pm - 5 pm CT / 1 pm - 4 pm MT / Noon - 3 pm PT
3 pm - VOR's Annual Members Meeting
An open meeting of the VOR Board of Directors,
discussing the state of our organization and the direction of our advocacy work.
We will announce the outcome of the voting for directors,
present the 2024 VOICE Award,
and introduce
URSULA
The 2024 VOR Teddy Bear
4 pm - Guest Speakers
Joe Macbeth - President, National Association of Direct Support Professionals will share his insights on the workforce and their perspectives on caregiving, the need for safety, security, better training, and a career path,
and how VOR members can advocate to rebuild the DSP workforce.
Jackie Kancir - National Policy Director of the National Council on Severe Autism, Jackie is the mother of a young woman diagnosed with SYNGAP1, an outspoken advocate for severe autism, a frequent blogger at "What We Need Yesterday",
and the co-proprietor (with her daughter Jadyne) of Bunny Egg Acres.
5 pm - Reports from the States
VOR members will update one another on the state of I/DD and autism services in their states. Please join us for this yearly event.
We encourage members to submit their state reports to us at info@vor.net
Registration is requested, but not required.
To register, please click here
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Ursula is VOR's 2024 Teddy Bear, crafted by our very own Mary Reese.
And Ursula needs a new home...
Any person who makes a donation to VOR from May 30 to June 30, 2024
will be eligible
to "adopt" Ursula.
Ursula's new family will be announced in July.
If you would like to adopt Ursula,
please click here
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Clinical Standards For Autism Treatment See Major Update
By Michelle Diament, Disability Scoop, June 10, 2024
For the first time in a decade, there are new guidelines for the most widely-used autism treatment.
The Council of Autism Service Providers, or CASP, a nonprofit trade group representing hundreds of autism service providers, recently released the third edition of the Applied Behavior Analysis (ABA) Practice Guidelines for the Treatment of Autism Spectrum Disorder. The document is intended to provide ABA standards of care for insurers, regulatory bodies, consumers, practitioners and other stakeholders.
“ABA is a highly effective treatment for autism. But it has to be correctly implemented at the highest quality,” said Lorri Unumb, chief executive officer of CASP. “These guidelines are key to achieving that.”
The latest edition reflects a myriad of changes in the industry since the second edition was published in 2014, according to Unumb. That includes the widespread use of state licensure for behavior analysts, the establishment of medical billing codes for ABA and the expansion of ABA insurance coverage mandates.
The updated guidelines address everything from training and certification for ABA practitioners to staffing and delivery models, treatment implementation, outcome measures and relevant state and federal policies. Additions in the new version include defining “medical necessity” in the context of ABA,
addressing the use of telehealth, greater detail on collaboration, coordination of care, transition and discharge planning.
Unumb said the guidelines are often relied on by regulators and insurers use them to understand what ABA should look like when authorizing services. Likewise, people with autism and their families can use the information to identify quality providers, she said.
At the same time, the guidelines help ABA providers across the country ensure consistency in their offerings.
“Just like a heart catheterization shouldn’t look different in North Dakota than it looks in New York, ABA should not look different from state to state — at least not on the basis of differing geography,” said Unumb, though she noted the inherent challenge in this given that ABA is meant to be highly individualized.
ABA can be provided at various levels of intensity based on medical necessity, the guidelines indicate. The duration of treatment can range from months to years or across the lifespan and services can be provided in clinics, homes, community settings or elsewhere.
The 88-page document is the culmination of a three-year process to incorporate the latest scientific evidence and clinical opinion, CASP officials said.
Read the full article here
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Major Increases in Autism and IDD Diagnoses Lead to Dangerous Gaps in Healthcare Services
By Daniel Mutter, WATE via EIN Newswire, June 10, 2024
With more children being diagnosed with autism and IDD, modern healthcare education leaves physicians ill-equipped to provide proper care.
As autism and intellectual and developmental disability (IDD) diagnoses climb to historic highs, health professionals are struggling to meet the unique healthcare needs of this growing population.
According to a newly published report, growth in autism and developmental disability services has increased by a staggering 49% year-over-year. Published by CentralReach, the report encompasses more than 3 billion anonymized clinical and financial data points. It includes aggregated data from 1,000 therapy providers offering applied behavior analysis (ABA), speech therapy, occupational therapy, and related services.
The report findings coincide with new data from the Center for Disease Control and Prevention (CDC), which indicates that 1 in 36 children are now identified with autism spectrum disorder, a drastic increase from 1 in 44 children in 2018. The CDC further found that 1 in 6 children aged 3 to 17 are now diagnosed with a developmental disability.
Despite this increase, there continues to be a significant lack of training on how to properly care for individuals with disabilities. According to a recent address to the United Nations as part of the World Down Syndrome Day 2024 Conference, Dr. Rick Rader shared that there are currently 1.4 million medical students worldwide who undergo 8 to 15 years of training to become a doctor. In that time, there is typically no formal, required, compulsory, or mandated curriculum to put students and patients with disabilities together. The skills, experience, and confidence that students acquire from treating patients with complex needs transfers to every patient, every family, and every community, benefiting everyone, including patients with disabilities.
The growing demand for skilled caregivers has created a demand for significant improvements in healthcare training to meet the unique needs of individuals with autism and IDD. In 2023, from Q2 to Q4, there was a 428% increase in demand for tools to enable caregiver training.
Continued
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Supreme Court Declines To Weigh In On Whether Parents Can Record IEP Meetings
By Michelle Diament, Disability Scoop, June 12, 2024
The U.S. Supreme Court says it will not hear arguments in a case looking at whether parents have the right to record meetings with their child’s school district about special education services.
The high court declined to consider the matter known as Pitta v. Medeiros this week.
Scott Pitta, a Massachusetts father, appealed to the Supreme Court earlier this year after lower courts decided that school officials could bar him from video recording a virtual meeting about his son J.J.’s individualized education program, or IEP.
Worried that information had been left out of the minutes from previous meetings, Pitta asked the Bridgewater-Raynham Regional School District in Bridgewater, Mass. to video record a September 2022 IEP meeting. The district declined, but offered to audio record instead. Pitta, however, said that this would be “unsatisfactory” because audio would not make clear who was speaking.
Pitta cited the First Amendment right to “record government officials in the performance of their duties.” But, lower courts rejected the claim because the government officials in this case were school employees engaged in a closed-door meeting, not acting in a “public space.”
“Pitta’s argument ignores established limitations in First Circuit law, which permit recording of government officials performing their duties only in indisputably public places in full view of the public, and even then, only when the act of filming would not hinder officials in the performance of their public duties and would serve public interests,” according to a decision issued by the U.S. Court of Appeals for the First Circuit in January.
Pitta appealed the case to the Supreme Court with the backing of the conservative Goldwater Institute arguing that circuit courts nationally are split on the issue. However, the high court dismissed the matter with no comment.
Read the full article here
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Protection and Advocacy - Alabama: | |
A notice appeared in the Federal Register this week, from the Administration for Community Living (ACL), soliciting comments from individuals and families in Alabama for a federal review they are conducting about Alabama's P&A, Alabama Disability Advocacy Program (ADAP).
Read the ACL's notice here
No reason was given by ACL as to why this hearing is being held. The timing for this review is interesting, based on the fact that ADAP has been in the news recently.
In February, ADAP filed a lawsuit against the State of Alabama claiming that the state violated the civil rights of thousands of disabled and elderly residents who rely on support from the state to get care in their communities.
Alabama’s Care Net for Elderly, Disabled People is ‘Crumbling,’ Suit Alleges
By Savannah Tryens-Fernandes, AL com, Feb 28, 2024
Alabama violated the civil rights of thousands of disabled and elderly residents who rely on support from the state to get care in their communities, a federal lawsuit alleges.
The Alabama Disabilities Advocacy Program filed the lawsuit on Feb. 12 against Alabama Medicaid and the state Department of Senior Services on behalf of 18 Alabamians, including 12 children who have disabilities.
“The community-based care net is crumbling,” said Shandra Monterastelli, a senior staff attorney at the Alabama Disabilities Advocacy Program.
According to the lawsuit, 12,000 individuals who are on the state’s elderly and disabled waiver — a program that helps people receive long-term care at home or in their communities — have had their civil rights violated by the state. ADAP is pursuing the lawsuit as a class-action on behalf of all 12,000 Alabamians.
“Through consistent and unabated legal violations, the State creates such extreme barriers to access that obtaining the services to which recipients are entitled is nearly — or, in many cases, actually — impossible,” the lawsuit states.
People enrolled on the waiver are supposed to receive bi-weekly payments to help pay bills, buy food, and purchase medical equipment, as well as to pay for nurses and health care providers to assist with treatments or give caregivers respite. But because of the “systemic failure” of the state, thousands of people struggle to access these services.
Continued here
In March, the Director of ADAP, James Tucker, announced he was stepping down.
That position has as yet not been filled, though an Interim Director is in place.
Q&A with Former ADAP Director James Tucker
James DeLano, University of Alabama at Birmingham Student & Faculty News, March 29, 2024
Below are a few excerpts from the interview:
Q. What five accomplishments are you proudest of from your time with ADAP?
A. Elevating and supporting the advocacy of people with disabilities. The biggest change in my work over time was to emphasize working with people, not just for people, as I learned primarily from the peer advocacy movement.
Working hard to demonstrate integrity in all our work, with all persons, i.e. clients, employees, colleagues and especially state and other officials who may be able to partner for needed change or sometimes become defendants. Credibility is crucial.
Prioritizing the fundamental truth that disability rights are civil rights, not an esoteric advocacy subject unto itself. Civil rights advocacy has a long and rich history in Alabama that is hard won and wholly deserved. It is recognized nationally and internationally. With cases like Wyatt v. Stickney and others, Alabama also has a rich history of disability justice advocacy that needs to be told more fully.
Prioritizing and supporting ADAP’s investigation of abuse and neglect of persons with disabilities, especially by government actors.
A wide variety of important advocacy initiatives addressing, mental health, child welfare and foster care, public education, jails and prisons, juvenile justice, voting, Medicaid and employment, as well as a number of issues that arose during COVID-19.
Q. How do you think Alabama measures in disability rights compared to other states?
A. On almost any relevant metric, Alabama ranks low in disability rights in the US, except maybe the degree to which we have supported people with disabilities to move to the community, even if they are not thriving there.
Q. What do you think Alabama's biggest barriers are?
A. Without a doubt, the biggest barrier to supporting people with disabilities to succeed is the absence of resources. We have good advocates and public servants who have vision and commitment. However, our state has made a political choice to not provide publicly funded services for human services.
There probably is no better example than our public leaders’ continued failure to adopt Medicaid expansion. As just one point of comparison, the public school budget in Montgomery County, Maryland is bigger than the state of Alabama’s general fund.
Read the full interview here
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‘Pitting One Group Against Another’: Tennessee Asks Disabled Adults to Make Way for Foster Kids
BY Anita Wadhwani, Tennessee Lookout, June 10, 2024
The letter from the state’s disability agency landed like a bombshell.
The state-run homes in which Kenneth and Kathy Lamar’s severely-disabled adult daughter has lived for seven years will be “decommissioned” to make room for kids needing foster care, it said.
“We will work with you and your loved one to review the options” read the form letter from the Department of Intellectual and Developmental Disabilities (DIDD).
The Lamars are among scores of guardians and families of adults living with intellectual and developmental disabilities who were notified May 6 of plans to repurpose the residences for children in the custody of the Department of Children’s Services (DCS).
Kathy Lamar said they feel betrayed by Tennessee disability officials, who — until now — have assured them that their daughter, Rebecca, will receive round-the-clock quality care in a Nashville cottage she shares with three other women for the rest of her life.
“It’s like they’re robbing Peter to take care of Paul because DCS has let these problems linger,” Kathy Lamar said last week. “My heart does go out to these children, but I’m not going to let them have my child’s bed. No. There’s no difference between her and these kids.”
Facing an uproar from affected families, DIDD officials said last week that “no one is being evicted from their homes and we have stated that in conversations with family members.”
It was the department’s intent “to start assisting people and families with identifying private provider service options in their communities and of the support we are prepared to offer those transitioning into appropriate community or private ICF settings (nursing homes),” their statement said.
But in their private conversations, family members reported feeling pressured by state officials who emphasized the pressing needs facing children in state custody. There are fewer spaces available for DCS kids with medical needs than adults receiving DIDD services, state officials noted.
“They are using the plight of young people in DCS custody to encourage the conservators and families to get these people to move,” said Zoe Jamail, policy director for Disability Rights Tennessee, which has written its own letter to the families saying they are under no obligation to move their loved ones out of the homes.
“They are pitting one group against another,” she said.
Read the full article here
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Massachusetts - Does the State Commission on the History of Institutional Care have a Private Agenda?
By Dave Kassel, The COFAR Blog, June 11, 2024
A year into the operation of a state commission on the history of the former Fernald Developmental Center and other state institutions, the commission members apparently have yet to discuss that history.
As a result of that and other evidence, we are concerned that the commission’s real purpose may be something else entirely.
In fact, the evidence shows the commission may be poised to recommend the closure of the last two existing state-run congregate care facilities for persons with intellectual and developmental disabilities in Massachusetts — the Wrentham Developmental Center and Hogan Regional Center.
Our concern is based on online minutes and recorded Zoom meetings of the Special Commission on State Institutions since those meetings began in June 2023. It is also based on prejudicial statements made prior to the establishment of the commission by individuals later appointed to the commission and by organizations given appointing power to the commission.
The commission’s enabling statute states that the commission will “study and report on the history of state institutions for people with intellectual or developmental disabilities or mental health conditions in the commonwealth including, but not limited to, the Walter E. Fernald state school and the Metropolitan State hospital.”
However, a provision in the statute also states, in part, that that the commission’s work “may include recommendations for… deinstitutionalization…(and regarding) the independent living movement.”
Why would a commission established to study and report on the history of state institutions also be authorized to recommend deinstitutionalization — in other words, the closure of currently existing institutions?
Continued
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DHS names new Director of Division of Developmental Disabilities Services
Press release from the Arkansas DHS, June 10, 2024
The Arkansas Department of Human Services (DHS) has named a licensed certified social worker with leadership experience serving Medicaid beneficiaries with complex behavioral health, developmental, and intellectual disabilities as the new director of the Division of Developmental Disabilities Services (DDS).
Jennifer Daniel Brezée, who most recently served as the Senior Director of Operations at CareSource PASSE, starts as DDS director today.
Brezée has a Masters in Social Work from the University of Arkansas at Little Rock and extensive Medicaid experience spanning the past 18 years. She began her career as a school-based mental health professional with Pathfinder, Inc., and later worked at Beacon Health Options as a Clinical Manager. With the implementation of the Medicaid PASSEs in 2019, she served as AVP of Operations with Empower Healthcare Solutions before transitioning to CareSource PASSE in 2020, serving as Director of Network and Operations, leading their implementation to become the fourth PASSE in Arkansas on January 1, 2022.
“DDS is charged with connecting Arkansans with developmental disabilities and delays to services that let them lead full, productive, and meaningful lives,” Brezée said. “I am incredibly proud to join DHS and to embrace this mission, and I look forward to building on DDS’ rich history of making positive impacts on the lives of beneficiaries across our state.”
Read the full press release here
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New York - Golisano Gift will Fund a New Intellectual and Developmental Disabilities Institute at University of Rochester
By Racquel Stephen, and Jeremy Moule, WXXI News, June 13, 2024
The University of Rochester has received its single largest financial gift ever, and it is using it to establish and build a center focused on health and quality of life issues that affect people with intellectual and developmental disabilities.
Philanthropist and Paychex founder Tom Golisano has pledged $50 million for the Golisano Intellectual and Developmental Disabilities Institute at the University of Rochester Medical Center. Officials have yet to decide where on the medical campus to build the institute.
"I'm excited about this project," Golisano, who has a son with disabilities, said during a news conference Thursday. "And I look forward to see it developing over the years, and I know it's gonna do a lot of good for a lot of people. We may never ever be able to measure the good it does, but it'll be great. I really believe that."
University officials said Thursday that the new facility will centralize and expand the university's patient care, community outreach, and caregiver support programs in one place. Those programs currently are spread across a handful of UR schools, institutes, centers and departments.
Officials also said the center will allow greater collaboration between the different disciplines.
The university has appointed John Foxe, chair of URMC's Department of Neuroscience and director of the Del Monte Institute for Neuroscience, to direct the new institute.
"We're really gonna swing for the fences here," Foxe said. "We intend to be the absolute best IDD Institute on the planet. And we want to be a global leader in providing new ways, new cures, new therapies and new standards of care. I'm certain we can do that."
Additionally, an Eastman Dental Center clinic that annually serves roughly 2,000 people with intellectual and developmental disabilities will be named the Golisano Specialty Clinic at Eastman Dental Center.
According to the university, about 19,000 people locally and 120,000 regionally have intellectual and developmental disabilities.
UR officials said that with today's announcement, Golisano has contributed nearly $100 million to the medical center personally and through his foundation.
Read the full article here
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Governor Gianforte Invests $700,000 to Expand Family Peer Support Services in Montana
Press Release from theState of Montana, June 12, 2024
Governor Greg Gianforte today announced an investment of $700,000 to expand peer support services for Montana families and caregivers.
As recommended by the Behavioral Health System for Future Generations (BHSFG) Commission, the investment represents the next allocation of $300 million in funding the governor devoted last year to reform and improve Montana’s behavioral health and developmental disabilities services systems.
“Parents and caregivers raising children with behavioral health challenges often neglect their own mental and physical health,” Gov. Gianforte said. “To address this important need, our latest investment will improve Montana families’ access to services and ensure caregivers are getting the support they need. I’m grateful to the Behavioral Health Commission for this recommendation and look forward to seeing it implemented.”
Family peer support services are provided by those who have lived experience raising a child with behavioral health challenges or special healthcare needs and are equipped to provide emotional support and resources to another family who is raising a child with similar needs.
These individuals provide active listening, emotional support, help with navigating the health care system, and connecting families and caregivers with more resources.
The initiative will fund five one-time grants that will be awarded to organizations with experience delivering these services, specifically those with experience supporting youth with serious emotional disturbance. The funding will be disbursed to grant awardees over a two-year period.
“A number of Montanans caring for children with behavioral health challenges spoke about their experiences during the BHSFG Commission meetings held throughout the state over the past eight months,” Montana Department of Public Health and Human Services Director Charlie Brereton said. “These individuals devote a massive amount of time and energy to the children they care for – often to the detriment of their own well-being. Family peer support services are an important tool in the toolbox to ensure that these caretakers remain mentally, physically, and spiritually healthy.”
A recent study conducted by Montana’s Peer Network showed that 94 percent of Montanans who received family peer support services reported an improved quality of life and 87 percent reported an increase in the quality of the care provided to a child.
Read the full press release here
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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?
Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?
Contact us at info@vor.net
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