October 25, 2024

Happy Hallowe'en!

VOR's Weekly News Update

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In Memoriam - Jill Barker


We are sad to announce the passing of our dear friend Jill Barker. Jill was a former member of VOR's Board of Directors, author of The DD News Blog, and the mother of two young men with autism.


Jill contributed to many of VOR's policy statements over the years. One of our favorite stories was her "Surviving the Inclusion Delusion: Danny At 40" where she shared her experience and insights with the DD System on the occasion of her eldest son turning 40.


Jill was a unique advocate. She was warm and generous, and had a great sense of the humorous side of the human condition. She was never confrontational, but came to meetings well-prepared, with facts and data to back up her assertions. Jill could present her position in a manner that was straight, concise, and indisputable.

Jill's obituary is available online. Those who knew Jill are encouraged to share fond memories here with her family. Please click here

The Uncertain Future of Medicaid:

Several articles on the uncertain future of Medicaid appeared this week, stemming from reports from KFF on Medicaid spending and the prospects the program faces in the upcoming presidential, congressional, and state elections.


As always, VOR is concerned with the vitality of this program, that our family members with I/DD and autism rely on for their long-term services.

State Medicaid Directors Concerned about Program’s Stability: KFF

By Rebecca Pifer, Slate, October 24, 2024


The Medicaid program has recently faced historic upheaval, including the pandemic and policies stemming from it that forced states to arduously recheck the eligibility of tens of millions of beneficiaries starting last spring.


Now, state leaders overseeing the safety-net program are concerned about the “new normal” coming out of that unwinding process — especially given this year’s presidential election between two candidates with vastly different views on federal healthcare programs.


The loss of more generous federal funding as healthcare costs continue to rise is also expected to place more stress on states in the 2025 fiscal year, according to the annual survey of state Medicaid directors by health policy research group KFF.


States expect national Medicaid enrollment to fall about 4% in 2025, continuing a larger enrollment slide this year because of unwinding. At the same time, states’ Medicaid spending is expected to rise 7%, the survey found.


Lower state revenue collections and other macroeconomic uncertainties will make it more difficult for states to invest in behavioral health and long-term services, or pay providers more, according to the survey. Efforts to address social determinants of health, or implement value-based initiatives, could also fall by the wayside.


Continued

Medicaid Leaders Buckle Up for More Rocky Times

By Maya Goldman, Axios, October 23, 2024


After weathering the pandemic, purging their rolls and coping with inflationary pressures, state Medicaid offices see more upheaval on the horizon, including a presidential election that could bring enormous changes to the safety-net program.


The big picture: A KFF survey of state Medicaid directors released Wednesday paints a picture of a health program serving nearly 73 million Americans that's beset by budgetary shortfalls and higher demand for behavioral health and long-term care.


  • That could just be the beginning. Conservative think tanks and GOP lawmakers have plans that would reduce the federal share of program costs and add work requirements if former President Trump is elected.


Driving the news: Medicaid directors told KFF they see intensifying financial pressures ahead, despite a relatively stable fiscal landscape heading into 2025.


  • Medicaid spending growth slowed in fiscal 2024 to 5.5% and is expected to continue on that downward slope in 2025 as enrollment continues to fall, per KFF.
  • But states also are projecting flattening revenue growth from tax collections and economic fluctuations, to the point where more than half of state Medicaid directors surveyed said they see at least a 50% chance that they'll have a budget shortfall next year.
  • The Medicaid programs already are raising their payments to providers for long-term care, outpatient behavioral health, primary care and dental services. About half of states said they increased inpatient and outpatient hospital payments this year.
  • Nearly three-quarters of states said they're grappling with rising prescription drug costs. And many states also reported growing per-enrollee costs from beneficiaries who have greater health needs, KFF said.

It all could eventually lead to more benefit cuts or coverage restrictions if the numbers don't add up.


  • "This issue of state budgets and fiscal conditions for the states is ... a big area of uncertainty," said Robin Rudowitz, who directs KFF's program on Medicaid and the uninsured.
  • Most Medicaid leaders also reported continued administration challenges, like workforce shortages within their own staff.
  • "These are all things that underpin the operations of state Medicaid programs — you really need workforce and systems," she said. "There's a lot of challenges there."


Zoom out: The presidential election is perhaps the biggest X factor


  • If Trump wins and Republicans control Congress, major changes would be almost a given. And, regardless, Medicaid waiver priorities are sure to change in a GOP administration, Rudowitz said.
  • A second Trump presidency could bring back work requirements and emphasize other program changes that restrict eligibility.
  • On the other hand, a Kamala Harris administration would likely keep the focus on expanding continuous enrollment policies to keep people from churning in and out of Medicaid as their incomes fluctuate and broadening social determinants of health coverage.


The challenges of implementing federal regulations in the wake of the Supreme Court decision that made it easier to challenge executive branch agency actions also came up as a frequent concern of Medicaid officials, Rudowitz said.


Continued

The KFF Reports:


Medicaid Enrollment & Spending Growth: FY 2024 & 2025

Elizabeth Williams, Anna Mudumala, Elizabeth Hinton, and Robin Rudowitz, KFF, Ocotber 23, 2024


For a three-year period following the onset of the COVID-19 pandemic, states provided continuous Medicaid enrollment in exchange for an increase in the federal share of Medicaid spending (known as the Federal Medical Assistance Percentage or “FMAP”). This policy resulted in the largest ever number of enrollees in Medicaid, which, along with enhanced subsidies in the Affordable Care Act (ACA) Marketplaces, contributed to the lowest ever uninsured rate. The 2023 Consolidated Appropriations Act (CAA) ended the continuous enrollment provision on March 31, 2023, requiring states to begin the process of “unwinding”, and millions of individuals have been disenrolled from Medicaid since the unwinding began. Most states began unwinding related disenrollments in late state fiscal year (FY) 2023 (which ends June 30 in most states) and completed disenrollments in late FY 2024, though state unwinding timelines vary. The CAA also phased down the enhanced federal matching funds through the end of 2023 (partway through FY 2024 for most states).


Heading into FY 2025, states are expected to wrap up unwinding-related eligibility redeterminations; however, uncertainty remains regarding post-unwinding Medicaid spending and enrollment trends and what the new “normal” will look like. Adding to this uncertainty are the loss of pandemic-related enhanced federal funding, shifts in state fiscal conditions, and the upcoming election, all which can have implications for Medicaid spending trends.


This brief analyzes Medicaid enrollment and spending trends for FY 2024 and FY 2025, based on data provided by state Medicaid directors as part of the 24th annual survey of Medicaid directors. 50 states (including the District of Columbia) responded to the 2024 survey, although response rates for specific questions varied. More information on response rates and methodology can be found at the end of the brief. Nearly all officials indicated that their spending projections reflect what is assumed in their states’ adopted budgets. Key survey findings include the following:


  • Following years of significant growth, Medicaid enrollment declined by -7.5% in FY 2024 and state Medicaid officials expect enrollment to continue to decline by -4.4% in FY 2025. These growth rates reflect the net Medicaid enrollment change from year to year including new enrollments, coverage losses due to unwinding, and some “churn” when those who lose coverage re-enroll within a short period of time. The unwinding of the continuous enrollment provision was the largest driver of enrollment declines.


  • Total Medicaid spending growth slowed to 5.5% in FY 2024 and is expected to slow further to 3.9% in FY 2025. While state Medicaid officials identified unwinding-related enrollment declines as the most significant factor driving changes in total Medicaid spending, they also noted a number of upward pressures on total spending. This included enrollment increases from eligibility changes such as 12-month continuous eligibility for children or overall state or Medicaid eligible population growth, the higher health care needs of enrollees that retained coverage during unwinding, and rate increases.


  • As anticipated, state Medicaid spending growth increased sharply in FY 2024 (19.2%) as the enhanced FMAP phased down and expired (after declining earlier in the pandemic despite high enrollment growth). State Medicaid spending growth is projected to slow to 7.0% in FY 2025, only slightly higher than total spending growth as the shifts caused by the enhanced FMAP expiration end.


Continued

As Pandemic-Era Policies End, Medicaid Programs Focus on Enrollee Access and Reducing Health Disparities Amid Future Uncertainties: Results from an Annual Medicaid Budget Survey for State Fiscal Years 2024 and 2025

By Elizabeth Hinton, Elizabeth Williams, Jada Raphael, Anna Mudumala, Robin Rudowitz, Kathleen Gifford, Aimee Lashbrook, and Caprice Knapp, KFF, October 23, 2024


Executive Summary

At the end of state fiscal year (FY) 2024 and heading into FY 2025, states were wrapping up the unwinding of the pandemic-related continuous enrollment provision, focusing on an array of other priorities, and facing uncertainty about the stability of state revenues. States were also looking ahead to federal and state elections in November and the potential implications of those elections for Medicaid enrollees, states, and providers. As states have emerged from the now-expired COVID-19 Public Health Emergency, which profoundly affected Medicaid enrollment and spending, many are focused on using Medicaid to address long-standing health disparities (often exacerbated by the pandemic), improve access to behavioral health services and long-term services and supports (LTSS), address enrollee social determinants of health, and implement broader delivery system and value-based initiatives. Serving over one in five people living in the United States and accounting for nearly one-fifth of health care spending (and half of long-term care spending), Medicaid represents a large share of state budgets and is a key part of the overall health care system.


This report highlights certain policies in place in state Medicaid programs in FY 2024 and policy changes implemented or planned for FY 2025, which began on July 1, 2024 for most states.1 The findings are drawn from the 24th annual budget survey of Medicaid officials in all 50 states and the District of Columbia conducted by KFF and Health Management Associates (HMA), in collaboration with the National Association of Medicaid Directors (NAMD). States completed this survey in mid-summer of 2024, and 50 states responded to this year’s survey, although response rates for specific questions varied.2 The District of Columbia is counted as a state for the purposes of this report. Given differences in the financing structure of their programs, the U.S. territories were not included in this analysis. 


Read the article and download the full report and executive summary here

Related content, an overview of Medicaid


Medicaid's Role in Empowering People with Intellectual and Developmental Disabilities

By Christopher Cantrell, Jonah P. B. Frohlich, and Anna Lansky, Manatt Health, October 24, 2024


More than seven million people in the United States have an intellectual or developmental disability (I/DD), encompassing conditions like autism spectrum disorder, cerebral palsy, Down syndrome, and other developmental disorders that affect mental and physical functioning. Medicaid plays a crucial role in supporting this high-needs population, accounting for almost a third of total Medicaid expenditures, including those through Home and Community-Based Services (HCBS) waivers. The intersection of Medicaid and the I/DD service delivery system requires collaboration between state Medicaid and I/DD agencies to address the myriad challenges that individuals face in accessing services, including long waitlists, workforce shortages, and access to behavioral health services. The recently released HCBS Access Rule further underscores the importance of close collaboration, as states must now meet new requirements for I/DD service delivery. This brief highlights the critical role of Medicaid in the I/DD delivery system, including key issues and challenges that individuals and states face. A forthcoming brief will highlight considerations for states as they seek to address these challenges in the context of implementing Access Rule requirements.


I/DD System Serves a Population with a Very Diverse Range of Support Needs.


Although definitions for I/DD can vary, particularly with respect to eligibility for specific programs, there are two common definitions for intellectual and developmental disabilities:


  • Intellectual disabilities, which include conditions that manifest before age 18 and significantly impact intellectual functioning and adaptive behavior; and,
  • Developmental disabilities, which include mental and/or physical impairments that manifest before age 22, are likely to continue indefinitely, and substantially limit functioning in areas of major life activities (e.g., learning, mobility, self-care).


The needs of individuals with I/DD extend across the lifespan. Across all age groups, 60 percent of individuals receiving I/DD services live with family, while 23 percent reside in group settings of varying sizes. Those in institutional settings are typically older or have more intensive service requirements. Regardless of their living arrangement, individuals with I/DD can have a range of support needs, which may co-occur with higher rates of chronic disease and a lower life expectancy compared to the general population.

Trending Toward Community-Based and Self-Directed Services


The modern I/DD delivery system reflects a broad shift from institutional settings toward community-based services, with the number of people in institutionalized settings decreasing from 194,650 in 1967 to 15,281 in 2021.[vii] While some level of institutional-based services remains, today the I/DD delivery system is largely characterized by the wide range of long-term services and supports (LTSS) and community-based services that are intended to promote individual choice, self-determination, and full integration into the community life.


Continued

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This Week's News:

While Home Care Is Touted As A Panacea, Rates And Regulations Hold Providers Back

By Andrew Donlan, Home Health Care News, October 18, 2024


The U.S. health care system is banking on home- and community-based services (HCBS) to help keep seniors and individuals with disabilities at home and away from more costly brick-and-mortar facilities. But for now, incongruent rates mean disparate access to those services state by state.


The Centers for Medicare & Medicaid Services (CMS) released the Medicaid Access Rule earlier this year. The goal of the rule was to enhance quality and transparency in HCBS across the country.


Included in the rule was the 80-20 provision, which broadly would force providers to pay 80% of HCBS reimbursement to direct care workers. CMS sees low pay as a reason for high turnover and reduced access in HCBS, and therefore believes enhanced pay from providers will mitigate those issues.


But the problem is far more complex than that. While the 80-20 provision is a nationwide blanket rule for pay in HCBS – which generally is operated by state Medicaid programs – there is no nationwide blanket rule for provider rates in HCBS.


Rates vary greatly state by state, as do minimum wage mandates, labor environments and regulations for home care. 


This puts providers in a precarious position. The Biden-Harris administration has touted home care as a cost-effective service that will help alleviate pressure on millions of Americans and their families.


The largest providers, however, are making sure they enter into markets where they can run a sustainable business. Even before the 80-20 provision is implemented, providers are picking their spots when it comes to expansion.


As the market responds to rate setting and regulations in each state, demand will be mostly covered in some places. In other places, home care-needy seniors and individuals with disabilities will be left without access.


Continued

Rural-Urban Disparities in Access to Home- and Community-Based Services and Supports: Stakeholder Perspectives from 14 States

Report from the National Institute of Health, National Library of Medicine (various authors)


Abstract:

Trends over time in the United States show success in rebalancing long-term services and supports (LTSS) towards increased home and community-based services (HCBS) relative to institutionalized care. However, the diffusion and utilization of HCBS may be inequitable across rural and urban residents. We sought to identify potential disparities in rural HCBS access and utilization, and to elucidate factors associated with these disparities.


Conclusions and implications:

LTSS rebalancing efforts that limit the institutional LTSS safety net may have unintended consequences in rural contexts if they do not account for supply-side barriers to HCBS. We identified supply-side factors that 1) inhibit beneficiaries’ access to HCBS, 2) affect the adequacy and continuity of HCBS, and 3) potentially impact long-term business viability for HCBS providers. Spatial isolation of beneficiaries may contribute to a perceived lack of demand, and reduce chances of funding for new services. Addressing these problems requires stakeholder collaboration and comprehensive policy approaches with attention to rural infrastructure.


Introduction:

Over the past several decades, state and federal initiatives have aimed to reduce use of institutional long-term services and supports (LTSS), such as nursing homes, through the increased use of home and community based services (HCBS). The recent Balancing Incentive Program (BIP) sought to facilitate increased use of HCBS among states spending less than 50% of Medicaid LTSS funds on HCBS. Such “rebalancing” efforts reflect consumer preferences for HCBS over institutional care and may facilitate community integration of beneficiaries in compliance with the Americans with Disabilities Act and the Olmstead decision.


Read the full report here

Massachusetts - High-profile legal advocacy organization won’t help DDS families in guardianship cases

By Dave Kassel, The COFAR Blog, October 21, 2024


We have been dealing lately with several cases in which family members of persons with intellectual and developmental disabilities have lost their guardianships and have embarked on difficult quests to obtain legal representation in probate court.


For many, getting an attorney is prohibitively expensive. Even for those who can afford it, finding attorneys with experience in going up against the Department of Developmental Services (DDS) can be frustrating.


For some time now, we have been exploring options for those families who find themselves pitted against both DDS and the probate court system. 


One lesson we’ve learned so far is perhaps not to rely on entities that bill themselves as legal advocacy organizations that fight for rights under guardianship.


A case in point concerns two Massachusetts-based and one national legal advocacy organizations that we recently contacted to request free legal help for a woman who receives DDS services and who told us she was placed involuntarily under the guardianship of a DDS provider.


Earlier this month, I emailed the Boston-based Disability Law Center (DLC), the Easthampton-based Center for Public Representation (CPR), and the National Center on Law and Elder Rights (NCLER) to ask whether any of them would represent this person.


All three are legal organizations that maintain that they advocate for the rights of people with disabilities. The CPR and NCLER have so far not responded to me. The DLC did respond, saying they don’t actually handle guardianship cases.


Continued

Oklahoma has no plans to fine troubled center for people with developmental disabilities   

By Kayla Branch, The Frontier via KOSU (NPR), October 21, 2024


The Robert M. Greer Center was facing over $500,000 in fines for failing to protect clients from threats to their safety. But the state decided to instead hire a consulting company to suggest changes at the facility.


State officials considered fining a center for people with developmental disabilities in Enid more than half a million dollars after inspectors found threats to residents’ safety last year. But instead, the state paid a consultant to visit the facility in April and suggest changes.


And despite continued citations at the Robert M. Greer Center this spring that found clients faced harm, injury or risk of death because of policy violations — one client was sexually assaulted by a peer and another ran away and was later found walking along a highway — the Oklahoma Health Care Authority says it has not referred the facility for new penalties for those violations either.


The Health Care Authority notified the Greer Center in March that the facility could face $10,000 in fines per day for a period between November 2023 and January when it was out of compliance with rules to keep residents safe.


States have the power to revoke licenses, impose fines or cancel contracts when facilities caring for vulnerable adults and kids aren’t able to follow rules and keep clients safe. Multiple state agencies in Oklahoma have a role in the oversight of these facilities.


But leaders from those state agencies decided against fining the Greer Center, officials said. Instead, Oklahoma Human Services contracted with Benchmark Human Services, an Indiana-based company, for up to $1.5 million to assess the situation at the Greer Center and help with oversight. The contract began on April 15, while the facility was again deemed to be out of compliance with state health standards to keep residents safe.


“Assessing fines as a penalty can sometimes add to the financial burden of a facility, resulting in reduced quality of care for the residents,” the Oklahoma Health Care Authority said in a statement. The state decided an outside consulting company would have a “more immediate and substantial impact on the quality of care provided.”


Revoking a facility’s license could have serious implications for residents, the Oklahoma State Department of Health said in a statement.


“Working with a willing license holder to achieve compliance and assure quality care can be far more beneficial for the residents,” the statement says.


Continued

Ohio - Montgomery County Board of Developmental Disabilities announces program cuts, layoffs

By Sydney Dawes and Jen Balduf, Dayton Daily News, October 22, 2024


The Montgomery County Board of Developmental Disabilities Services will make $8.9 million in cuts, including 62 full-time jobs, to balance its budget proposed for 2025, the agency has announced.


“We hate that this is happening,” said county Developmental Disabilities Superintendent Pamela Combs. “Our families can be assured that we are providing all mandated services and we will continue to provide all mandated services. We’re going to do all that we can to find other avenues for these services that are being cut and reduced.”


County boards of developmental disabilities are required by Ohio law to provide certain services. This includes matching Medicaid waivers, employment support services and more. The board is reducing and eliminating most non-mandated services. The cuts include:


  • Eliminating 62 full-time staff positions
  • Eliminating mileage reimbursement for all staff, including those who travel daily to provide casework and early intervention services, and overtime
  • Reducing capacity in early intervention, a critical but non-mandated service
  • Discontinuing its mental health supports and services program, which provided services tailored to more than 125 people dually diagnosed with developmental disabilities and mental illness, and transitioning it to private providers
  • Discontinuing the recreation program, which provided year-round programming and respite to children and adults with developmental disabilities
  • Discontinuing the family support services program, which provided basic home modifications and supports for families of people with developmental disabilities who choose to care for their loved one at home; equipment and training for people with developmental disabilities and their family members; and respite and camp services for children, youth and adults
  • Discontinuing the high school transition supports and contracts, including the school-to-work employment program and funding for the school-to-adult life transition series
  • Reducing supports to school-age children and individuals navigating community systems that typically assume independence
  • Eliminating funds for training and membership in the developmental disabilities state association
  • Eliminating a contract for outside security services


Additional cuts are not anticipated for 2025, Combs said.


The board cited an increase in the number of clients served, and higher costs plus revenue losses from the adult day services program and other income streams that exceeded funds available from two Montgomery County human services levies and the 1-mill developmental disabilities levy.


According to Developmental Disabilities’’ most recent annual report, nearly 82% of the organization’s funding came from local dollars. The agency received $58.7 million for its 2024 budget, approved by the Montgomery County commission.


Since 2006, Montgomery County Developmental Disabilities has experienced a 166% increase in the number of individuals served, but also a 173% increase in waiver enrollment, according to the agency.


Continued

Kansas families helping intellectually disabled kids are burnt out, doing care for free, KU study says  

By Blaise Mesa, The Beacon, October 23, 2024


Kansans helping friends or family who have intellectual disabilities are burnt out. They miss work, sometimes get a new job entirely and regularly offer daily care while paying for that help from their own pockets, a University of Kansas study said. 


Those families appealed to the state for help, but the intellectual developmental disability, or IDD, waiver system has a 10-year waitlist. That program is supposed to help Kansans with intellectual disabilities — like autism — get services in their homes and communities. 


They wait so long that some age out of the list before getting help, and some die on the waitlist. 

Kansas has a plan to cut down that waitlist. Rep. Will Carpenter, an El Dorado Republican, said the state now knows what exactly to focus on because of the KU study. 


“We kind of got a little ahead of the game with the community support (program), not really knowing what services (were needed),” he said Tuesday in a Statehouse committee. “We found out that we’re pretty much on track for the services needed for that.”


The KU study found that:

  • 86% of caregivers help for free. Nine percent had $1,000 in monthly caregiving expenses. 
  • 84% of people on the waitlist need help in their community, 74% need help at home and 68% need help at work.
  • 54% of people on the waitlist are in fair or poor health. Only 44% said they were in excellent health.
  • 50% of people on the waitlist want to live with a parent or relative.
  • 28% of caregivers with family or friends on the waitlist cared for one to three other people.
  • 20% of families have no other caregiver available if they couldn’t provide support. Another 17% were not sure what would happen.


In Kansas social services terms, “waiver” actually means a child qualifies for special services like intense treatment to deal with everything from autism and intellectual disabilities to “serious emotional disturbances.” 


Continued


Related Story: Kansas Disability Waitlists See Major Progress after Legislative Action (The Kansas Reflector)

More kids than ever need special education, but burnout has caused a teacher shortage      

By Kimber Wilkerson, The Conversation, October 21, 2024


A growing number of students in public schools – right now, about 15% of them – are eligible for special education services. These services include specially designed instruction for students with autism, learning or physical disabilities, or traumatic brain injuries. But going into the current school year, more than half of U.S. public schools anticipate being short-staffed in special education. Dr. Kimber Wilkerson, a professor of special education and department chair at the University of Wisconsin-Madison, explains why there’s a shortage and what needs to be done to close the gap.


Which students receive special education services?

Kimber Wilkerson: Students with a disability label receive special education services. They need these additional services and sometimes instruction in school so they can access the curriculum and thrive like their peers. 


What is happening with staffing for special education?

Wilkerson: Since special education became a thing in the ’70s, there have always been challenges in filling all the special education positions.


In the past 10 years preceding the COVID-19 pandemic, those challenges started to increase. There were more open positions in special education at the beginning of each school year than in previous decades. In the 2023-24 school year, 42 states plus the District of Columbia reported teacher shortages in special education.


What is causing these shortages?

Wilkerson: One, there are fewer young people choosing teaching as a major in college and as a profession. And special education is affected by these lower rates more than other forms of education.


Also, there’s more attrition – people leaving their teaching job sooner than you might expect – not because they’re retiring, but because they are tired of the job.


They want to do something different. They want to go back to school. Sometimes it’s life circumstances, but the number of people leaving the job before retirement age has increased. And in our state, Wisconsin, about 35% of all educators leave the field before they hit their fifth year.


That number is even higher for special educators. About half of special educators are out of the profession within five years

.

Why do special education teachers leave the profession?

Wilkerson: There’s not a national study that speaks to that reason. There are some localized studies, and people report things like too much paperwork or too many administrative tasks associated with the job. Sometimes they report the students’ behavioral challenges. Sometimes it’s a feeling of isolation, or a lack of support from the school. 


Continued

Students with special educational needs are years behind their peers – they need specialist teachers in mainstream classrooms

By Johny Daniel, The Conversation, October 24, 2024


A new report from the National Audit Office into special educational needs provision in England has concluded that despite a significant increase investment over the last decade, “the system is still not delivering better outcomes for children and young people”.


This is borne out by my research. Students with special educational needs in England are significantly behind in reading, writing and maths compared to their classmates.


Laws like the 2014 Children and Families Act, which aimed to improve support for these students, haven’t closed the gap. My recent research suggests that we need to rethink current educational policies and practices.

Rethinking support

Despite well-intentioned policies, current educational frameworks are falling short. A major issue is the heavy reliance on teaching assistants as the main support for students with special educational needs in mainstream schools.


Teaching assistants are dedicated and play an important role in classrooms. However, research shows that their involvement can sometimes have negative effects on academic outcomes due to a limited range of teaching methods and lack of professional development. Over-relying on teaching assistants without specialised support might be one reason for the continuing achievement gap.


This raises important questions. If we would not accept teaching assistants as the main instructors for typical students, it should not be acceptable for students with special educational needs, who have more complex learning needs.


Read the full article here

New Hampshire - Concord schools see influx of new students with disabilities, straining budget and support services 

By Jeremy Margolis, Concord Monitor, Octover 22, 2024


Over 200 students with disabilities have enrolled in the Concord School District since last summer, an influx that has far exceeded the district’s projections and strained its support services.


The unexpected increase will cost the district about $600,000 more than anticipated in special education expenses this year, district administrators told school board members last week. Last spring, the board had allocated $28 million, or about a quarter of the district’s $107.9 million budget, to student services for this school year.


The increased cost – which will primarily be spent on hiring more support staff – is not expected to materially affect taxpayer’s rates this year. Rather, it will primarily be covered by deferring the planned full payment on district transportation and HVAC bonds, Business Administrator Jack Dunn said.


The number of Concord students with individualized education programs, or IEPs, has increased by a total of 124 since last summer, according to data from the district. Two hundred eleven students with IEPs moved into the district, while only 87 left.


“Typically over years that balances,” said John Fabrizio, the assistant superintendent for student services. “Well, we’re unbalanced.”


Last year, 20% of the district’s nearly 4,000 students had IEPs. Because enrollment data for this year has yet to be publicly released, the exact percentage increase is not yet clear.


Concord is not alone in experiencing a special education bump. Statewide, the percentage of students with IEPs has risen 40% between 2016 and last year – from 12% of all students to 17%, according to Department of Education data.


Continued

Oklahoma caregivers say they’re being cheated by the state out of incentive payments

By Kilee Thomas, KOCO News 5 (ABC) , October 23, 2024


Earlier this month, KOCO 5 reported that the state Department of Human Services was late in sending out retention bonuses to caregivers enrolled in its initiative to reduce the statewide shortage.


Now caregivers that have switched agencies said they’ve been told they’ll have to start all over again.

On Wednesday, KOCO 5 spoke to a caregiver who enrolled in the state’s incentive program and received the first $1,000 payment, but right before receiving the second bonus, he switched agencies to improve his client’s quality of life. Now DHS says he’s back at the starting line.


“I’m working with the same individual, doing the same thing, in the same house on a day-to-day agency, but because I’m doing it for a different agency and worked for five months at one agency and one month at the other, they said I would not qualify for the bonus,” said Joseph Lynch, a direct support professional in Bartlesville.


Lynch said he and two others care for a client with developmental disabilities around 24 hours a day.


All three are enrolled in DSP+, the DHS initiative to recruit, retain and reward direct support professionals in Oklahoma.


The profession is one the state keeps struggling to maintain, with a turnover rate of 47%.


“It’s difficult to keep people because of the horribly low wages,” Lynch said.


Continued


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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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