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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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The Connection Between Social Security Disability Benefits and Health Coverage Through Medicaid and Medicare
By Maiss Mohamed, Alice Burns, and Juliette Cubanski, KFF, September 10, 2024
In 2021, 13 million people under age 65 received income from the Social Security disability programs, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), which provide monthly income to people who are unable to work on account of a disability. A less-commonly appreciated benefit of qualifying for Social Security disability programs is the connection to health insurance coverage through Medicare or Medicaid. In most states, SSI beneficiaries automatically qualify for and receive Medicaid coverage, while SSDI beneficiaries qualify for Medicare after receiving disability benefits for at least two years. Many who receive benefits from the SSDI and SSI programs also qualify for both Medicare and Medicaid, known as dual-eligible individuals.
This analysis examines enrollment in disability programs and characteristics of enrollees from 2002-2022 Social Security Administration data and related health coverage through the Medicare and Medicaid programs using data from the Centers for Medicare and Medicaid Services for 2021, the most recent year of data available. (See methods for details.) State-level data about the disability programs are also available on KFF’s State Health Facts.
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What are the Differences Between SSDI and SSI?
Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) are federal programs administered by the Social Security Administration (SSA), but they differ in terms of how people qualify, the benefits they receive, and how they are financed. Both programs require adults under age 65 to have a qualifying disability, but SSI also includes qualifying disability criteria for children.
How do people qualify for SSDI and SSI? To qualify for SSDI, enrollees must have a sufficient work history, which varies by age but generally requires ten years of employment at least five of which were within the past decade. Some individuals with a disability can qualify based on a relative’s work history.
Read the full article here
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Addressing Delayed Hospital Discharges for Patients With Intellectual and Developmental Disabilities and a Mental Illness
Avra Selick, Ph.D., Tiziana Volpe, Ph.D., Susan Morris, M.S.W., R.S.W., and Yona Lunsky, Ph.D., C.Psych. Psychiatry Online, September 11, 2024
Abstract
Adults with intellectual and developmental disabilities (IDD) who also have a co-occurring mental illness are almost five times as likely to experience a delayed hospital discharge as adults with mental illness only. Such delays occur when a patient no longer requires hospital-level care but cannot be discharged, often because of a lack of appropriate postdischarge settings. Delayed discharges contribute to poor patient outcomes, increased system costs, and delayed access to care. Recently, practice guidance was developed in Canada, identifying 10 components of successful transitions for this population. Core to this guidance is a patient-centered, cross-sectoral approach, including the patient, family, hospital team, community health care providers, and IDD providers.
Prevalence and Consequences of Delayed Discharge for Patients With IDD
Compared with the general population, adults with IDD are more likely to have a delayed discharge. For example, a review of U.K. studies found that up to 88% of inpatients with IDD experienced such a delay (3), and a Canadian study reported that inpatients with IDD and mental illness were five times as likely to experience a delayed discharge as inpatients with mental illness only.
Extended hospitalization can lead to negative outcomes for all patients, including hospital-acquired infections, physical deterioration, and loss of important relationships, but hospitals are particularly challenging for people with IDD. Most psychiatric units lack the consistency, structure, and calm sensory environment necessary for this group. Unsupportive environments, along with poorly trained staff, can escalate distress and increase restraint use and seclusion, contributing to further deterioration, reduced communication and adaptive skills, and increased risk for being a victim of abuse. Furthermore, delayed discharges cause a cascade of system challenges, including treatment delays and worsening of untreated conditions for other patients, increased costs, and staff burnout.
Key Factors Contributing to Delayed Discharge and Failed Transitions
Although the factors contributing to delayed discharge for people with IDD vary, several key challenges are often present. The first challenge is insufficient appropriate community housing for people with IDD. Compared with other groups, patients with IDD are less likely to return to their previous home after hospitalization (9), and the lack of appropriate, affordable, and supported community housing is one of the most commonly cited reasons for delayed discharge of such patients. In addition to causing delay for the patient, this situation creates pressure for hospitals to discharge individuals with IDD to inappropriate settings, including family homes with inadequate supports, homeless shelters, or nursing homes (10), which can result in failed transitions and rehospitalizations
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The second common challenge is siloed and fragmented systems. In North America, the mental health and IDD sectors typically operate separately with little integration or coordination, making it challenging to find appropriate resources to support patients with both mental illness and IDD in the community. Additionally, despite legislation affirming the rights of people with IDD to needed care, many psychiatric services exclude individuals with IDD (12). Even when patients are eligible, organizational policies may prohibit cross-sectoral care during the transition period, such as IDD providers engaging with patients before discharge or hospital clinicians continuing to provide mental health support after discharge.
The third challenge is that patients and families are not effectively included in transition planning. Often it is incorrectly assumed that patients with IDD cannot participate in decision-making processes; however, with the right supports, these individuals can and should be included (2, 13). Furthermore, although people with IDD are more likely to rely on caregivers for support, adult-oriented health care often fails to include caregivers, resulting in poor-quality transition plans and unsuccessful transitions.
Finally, another key challenge is an insufficiently prepared workforce. Providers in both the mental health and IDD sectors often lack the training, knowledge, and skills to effectively support people with both IDD and complex mental health needs. Consequently, hospital clinicians may struggle with correctly diagnosing the conditions of such patients, providing appropriate care, and liaising with IDD services to support successful transitions. Community‐based mental health and IDD providers may be reluctant to provide posttransition community care. These workforce challenges pose additional barriers to identifying the community housing, staffing, and clinical supports necessary for successful transitions.
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Seizure Tracker
One of our members shared a link for a site that helps individuals, families, and DSPs track seizures in our loved ones with I/DD and autism. For more information about Seizure Tracker, please go to: https://seizuretracker.com
Please note that VOR has not used this app, and does not formally endorse its use, but that it may prove to be a helpful resource for some of our families.
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Contacting Congress - Information from GovTrack
By Amy West, govtrack, September 4, 2024
We're not the boss of you
Our last post, on contacting Congress, generated a number of responses on the topic of whether one should contact a member who doesn't represent them.
First, we just want to be clear: you can contact whomever you like! What we're trying to convey is that it won't get you very far if the people you contact do not represent you. They are responsive to the people of their districts because that's who elects them. But it's your life to spend as you see fit.
More substantively, we wanted to address the questions below:
Contacting committees, especially if my representative isn't on that committee
It's possible. Committees typically have contact information like the House Agriculture Committee does. Not sure of the effectiveness though. The point of contacting members is to attempt to get them to do what you want. The committee staff may not be the best point of leverage.
My representative doesn't appear to do any work in the subject area that I'm concerned about
This is trickier. But, keeping in mind that voter pressure is very effective leverage, start by contacting the nearest district office to get an appointment (with staff; it won't initially be with the legislator) to talk about why they aren't focusing on that area and why you think they should. Follow up! Developing a relationship and keeping up the pressure are the name of the game. And, even if your member doesn't develop a focus in your specific area, that doesn't mean that the contacts you make won't help you to try to get the word out to members who do.
What if I want to buy or at least rent a member?
Well, this is a crime and we're not going to provide advice on how to do it. We can relate the story of former Rep. Duke Cunningham who had a bribe menu and went to jail for it.
Read the full article here
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Upcoming Meetings of
The President's Committee for People with Intellectual Disabilities (PCPID)
September 26, 2024 9am - 4 pm Eastern
September 27, 2024 9 am - 3 pm Eastern
The President's Committee for People with Intellectual Disabilities (PCPID) will host a meeting for its members to discuss the 2024 PCPID Report. The meetings will be held in-person in Washington, D.C. and on Zoom. All PCPID meetings, in any format, are open to the public. Members of the public can join in person or virtually. This meeting will be conducted in presentation and discussion format. The PCPID is overseen by members of the Administration for Community Living (ACL), and all meetings are facilitated by the ACL.
This year's report will focus on Home and Community Based Services (HCBS) and discuss emerging issues facing people with intellectual disabilities who receive services through the HCBS channel of Medicaid.
Once again, people with I/DD or severe autism who require ICF services or choose to work in 14(c) programs will not be included in the findings and recommendations of this committee.
We urge our members to sign up for the virtual meetings and make your presence known. Remember:
"If you don't have a seat at the table, you are probably on the menu."
Please click here to register for the Zoom meetings and to submit comments to the PCPID
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Growing need. Glaring gaps. Why mental health care can be a struggle for autistic youth
By Emily Alpert Reyes, Los Angeles Times via Fort Bragg Advocate-News, September 7, 2024
In April, a group of Orange County parents flew to Sacramento to attend a conference hosted by Disability Voices United, an advocacy group for people with disabilities and their families.
They wanted to emphasize three issues to state officials at the event: the paucity of mental health care for children with developmental disabilities, the confusing mess of government systems meant to help them, and the gaps in availability of day-to-day caregiving.
Among them was Christine LyBurtus, a single mom living in Fullerton. Last fall, after repeated rounds of 911 calls and emergency hospitalizations, she had made the agonizing decision to move her son, Noah, who is autistic, into a state-operated facility for at least a year.
LyBurtus had struggled to find the support she needed to keep him at home. “Families are being forced to give up their children to group homes and treatment centers over 12 hours from their homes … or out of the state of California entirely,” she told the crowd at the conference.
“I beg you to hear us,” she said to state officials before turning from the microphone.
Despite the growing diagnosis of autism, which has been estimated to affect more than 2 million children and teens across the country, experts and advocates have bemoaned glaring gaps in services to meet the mental health needs of autistic youth.
Some researchers have estimated that upward of 90% of autistic youth have overlapping conditions like anxiety, depression or ADHD. Many have suffered alarming levels of trauma.
Yet “there are very few specialized facilities in the country that meet the unique needs of individuals with autism and co-occurring mental health conditions,” especially in crisis situations, said Cynthia Martin, senior clinical psychologist at the Child Mind Institute, which is based in New York.
Between 2020 and 2021, the number of California children and teens served by the state developmental disability system who were deemed to have “complex needs” — a state term for those who needed a range of crisis services or landed in a locked psychiatric ward — rose from 536 to 677, according to a report released last year by the California Department of Developmental Services.
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Justice Department Secures Agreement with Johns Hopkins Health System to Provide People with Disabilities Equal Access to Medical Care
US Department of Justice Press Release, September 12, 2024
The Justice Department announced today that it filed a complaint and proposed consent decree in the U.S. District Court for the District of Maryland resolving allegations that the Johns Hopkins Health System Corporation (Johns Hopkins) violated the Americans with Disabilities Act (ADA) by denying people with disabilities equal access to medical care by excluding their necessary support persons.
“Patients with disabilities may need the assistance of a support person, like a family member or aide, to have equal access to health care, especially during emergencies,” said Assistant Attorney General Kristen Clarke of the Justice Department’s Civil Rights Division. “Policies and training go hand in hand when it comes to ensuring that health care providers and their employees are protecting patient rights and not excluding support persons improperly. Ensuring equal access to medical care is a priority for the Justice Department.”
“Patients with disabilities deserve equal access to healthcare,” said U.S. Attorney Erek L. Barron for the District of Maryland. “Appropriate medical care often requires them to be accompanied by essential support persons. Johns Hopkins’ recommitment to meeting the needs of its patients with disabilities and ensuring that they are treated with dignity and respect is a welcome outcome of this agreement.”
Some individuals with dementia, intellectual disabilities, autism spectrum disorder and other disabilities may require the assistance of a support person (such as a family member, personal assistant or other individual knowledgeable about them) when accessing medical care. Support persons can help individuals with disabilities to communicate, such as providing their medical history and answering questions, and to understand what is happening, such as medical instructions they are given during their care and discharge.
The complaint alleges that Johns Hopkins failed on numerous occasions to follow its own policies on visitors and support persons and did not permit patients with disabilities to be accompanied by their support persons. As a result, these patients were unable to receive equal care. Title III of the ADA requires private hospitals and other health care providers to provide individuals with disabilities with full and equal enjoyment of their goods and services.
Under the proposed consent decree, which the court must approve, Johns Hopkins has agreed to pay $150,000 to compensate multiple affected individuals. Johns Hopkins will also update its support person policies to ensure ADA compliance, train its employees on its support person policies and the ADA and report to the department on any future complaints regarding support persons.
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Feds Urge Guardrails To Protect Access To Medicaid Community-Based Services
By Michelle Diament, Disability Scoop, September 9, 2024
With new guidance, federal officials are outlining steps that states should take to ensure that people with disabilities are not inadvertently dropped from Medicaid home and community-based services.
States are regularly required to evaluate the eligibility of Medicaid beneficiaries. For people with developmental disabilities, the outcome of this process can affect not only their medical coverage, but also their access to community living supports.
Medicaid renewals were paused during the COVID-19 pandemic, but more than 25 million have lost coverage since the process was restarted last year, according to KFF, a nonprofit that conducts health policy research.
Now, in a 35-page informational bulletin, the Centers for Medicare & Medicaid Services is urging states to act so that people with disabilities retain the coverage they’re entitled to.
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‘It was pure panic’: Disabled Florida woman who needs almost 24/7 care had Medicaid coverage stripped during the state’s ‘unwinding’ of the program — thousands suffered the same fate
By Bethan Moorcraft, Moneywise, September 7, 2024
Lauren Eakin suffered “pure panic” when her Medicaid coverage lapsed in June.
The 34-year-old Floridian is legally blind and confined to a wheelchair with cerebral palsy — but she’s managed to live a relatively normal life in her own apartment, with the help of caregivers paid for through Medicaid.
“I need help for the rest of my life,” she told NBC News. “[From] getting up to eating, to preparing meals, to going out in the community, I need help … almost 24/7.”
But in June 2024, the payments to her caregivers suddenly stopped and Eakin’s quality of life spiraled overnight. The state of Florida had revoked her essential Medicaid coverage after she failed to provide them with information that would prove her eligibility for financial support.
Eakin is one of 1.9 million Floridians who lost their Medicaid coverage, per KFF, in a process known as “unwinding.” According to NBC, patient advocates estimate that thousands of disabled people, like Eakin, have been a victim of these cuts.
Medicaid ‘unwinding’
During the pandemic, the federal government ruled that people enrolled in Medicaid could maintain their coverage for the duration of the public health emergency — even if they had technically lost their eligibility through that period.
That continuous enrollment condition officially came to an end on March 31, 2023, after which point states resumed their normal operations and were able to terminate Medicaid enrollment for individuals no longer eligible — perhaps because their income had increased or they enrolled in another health insurance plan.
This “unwinding” process has hit some difficult snags in several states, including Florida — with thousands of Americans, like Eakin, being disenrolled for procedural or administrative reasons like incomplete paperwork, submitting a late application or not having a current address on file.
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Massachusetts - State’s abuse registry effectiveness, expansion debated
By Alison Kuznitz, Daily Hampshire Gazette, September 11, 2024
Three years after the state launched a registry of providers found to have abused individuals with intellectual and developmental disabilities, some advocates warn that too many workers are slipping through the cracks and staying employed in the human services field.
Meanwhile, another advocacy group and lawmakers say they are focused on expanding the reach of the registry, with the aim of ensuring that more vulnerable people in state-run or state-funded programs are shielded from abuse and neglect.
The Disabled Persons Protection Commission (DPPC), an independent agency tasked with investigating caregiver abuse and neglect of people ages 18 to 59 with intellectual and developmental disabilities (I/DD), says it received just over 40,600 complaints over a nearly three-year period, according to data shared with the News Service.
Among complaints within DPPC’s jurisdiction, officials say they screened in over 7,400 allegations for investigation that were “inclusive of all victims with a disability,” and issued 266 notices that substantiated provider abuse of a person with an intellectual or developmental disability. But those notices do not always lead to placement on the registry.
Providers are listed on the registry after officials investigate and confirm the abuse allegation — and in some instances, after officials uphold abuse findings through the petition process.
Some advocates, pointing to a subset of the 266 initially substantiated abuse cases that did not ultimately put providers’ names on the registry, say more workers potentially belong on the platform to bolster the state’s protection efforts.
Providers whose names appear on the registry, created after the passage of Nicky’s Law in 2020, are barred from working for the Department of Developmental Service or DDS-contracted employers for at least five years. Before Nicky’s Law, only individuals with criminal convictions faced hiring barriers.
Even after officials initially determine that providers’ conduct constituted abuse, the majority of those workers are not placed on the DPPC Abuser Registry, according to a recent blog post from the Massachusetts Coalition of Families and Advocates (COFAR), a nonprofit that advocates for people with intellectual and developmental disabilities. Providers have the right to petition for their cases to be reviewed, which in most outcomes enables their names to avoid registry placement, COFAR found.
There were 266 cases of “initial registrable abuse substantiations” for fiscal years 2022-2024, according to COFAR, based on data the group obtained from DPPC through a public records request. Across 161 petition decisions, officials affirmed abuse in 132 cases — and reversed abuse substantiations in 29 cases, according to COFAR.
Among those 132 cases where abuse was affirmed through the petition process, only 47 providers ended up on the registry, COFAR said. In 85 cases, the DPPC determined the abuse was not registrable, COFAR said.
“I don’t think that people realize that there is this situation that appears to provide a possible loophole,” David Kassel, COFAR’s research and communications director, said. “I think it raises some questions about how effective this registry is in terms of preventing abusive caregivers from continuing to work.”
Read the full article here
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One of the most important issues facing our loved ones with I/DD and autism will be decided in the coming election.
MEDICAID
We encourage our families to research this subject for themselves. Type into your chosen search engine topics like "Medicaid and the 2024 Election" or the name of the candidates that appear on your ballot along with "Medicaid Policy".
Your vote will directly affect the future of your loved ones, and the loved ones of other families like yours.
BE INFORMED, AND VOTE.
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September is National Direct Support Professionals Appreciation Month | |
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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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DSPs work in a variety of settings, helping people all over the spectrum to lead better lives. Here are a few stories of how they are being celebrated around the country this month.
North Carolina Maine Ohio South Dakota Minnesota Missouri
VOR encourages its members to reach out and share some love with the caretakers who help your loved ones live their best lives. If you would like to share some of your stories, or articles about celebrating DSPs in your area, please contact us at info@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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Elk Grove Village, IL 60007
Toll Free: 877-399-4867 Fax: 877-866-8377
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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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