June 9, 2023

VOR's Legislative Initiative, 2023

Thank you to each of you who has made the time to attend VOR trainings and Capitol Hill meetings over the past month. This level of engagement is the MOST impactful advocacy work you can do as data shows that Members of Congress prioritize the voice of their constituents over other individuals or groups.

If it is helpful, you can request VOR leadership or our policy advisor Gayle Gerdes attend and lead the congressional meeting. Your role can be to focus on the critical component of sharing your personal story. You do not have to lead a meeting. Data combined with story is a powerful duo that can crystalize a message, and we appreciate you sharing yours.

Again – thank you for engaging with Members of Congress. As you continue to arrange meetings, please let us know if you have any questions or need any assistance. Just write to us at [email protected] and we will be happy to work with you.

VOR's 40th Anniversary Annual Meeting

June 11, 2023 - 11:30 am - 5:30 pm (Eastern)

On Zoom

This Year's Schedule (All Times Eastern)

11:30 am - Open Meeting of the VOR Board of Directors

Reports from our President and Committee Chairs

Moderated by VOR President Joanne St. Amand &

Executive Director Hugo Dwyer

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This Year's Guest Speakers:

12:30 pm - Congressman Glenn Grothman - (R-WI)

Rep. Grothman will speak about two bills he has introduced in Congress, and how to support his efforts to preserve 14(c) employment opportunities

1:30 pm - Rep. Charlie Meier (Illinois General Assembly)

Rep. Meier will speak on the bills he has introduced in the state legislature and how they will improve safety and oversight for people with

I/DD and autism

2:30 pm - Amy S. F. Lutz, PhD.

Dr. Lutz will share with us her experiences with Severe Autism, both personal and professional, and give us an advanced peek at her new book:

Chasing the Intact Mind:

How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most

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And, as we do every year, we will have a special networking meeting for our members to submit reports on what is going in their states, so that we can share our problems, solutions, strengths, and hope.

3:30 - 5:00 - Reports from the States

VOR Members share news about the state of their state

Moderated by Roslyn Leehey

Those wishing to participate may submit their State Reports to

[email protected]

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5:00 - 5:30 - Closing Ceremonies

2023 Voice Award Presentation

Swearing in the 2023-24 Board of Directors

Raffle for the 40th Anniversary VOR Bear

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Please Click Here to Register

This event is open to all.

You do not need to be a member of VOR to attend this meeting.

You do not need to donate to VOR if you would like to attend this meeting.

You don't even have to register to attend this meeting.

But if would make us happy if you were to do so.

The Zoom Link for the meeting is also available on our website at:

https://www.vor.net



VOR's 2023 Annual Meeting

The Importance of Sharing Our State Reports

This is a great opportunity to actively participate in VOR's mission of sharing information to help other members to better understand the bigger picture of what is happening across the country (and around the world) that affects people with I/DD and autism.

Our State Report forum is a longstanding tradition at our annual meeting. It gives us an opportunity to get to know one another, to learn from the experience of others, and to find out about trends that we might not otherwise know about until it's too late.

We hope that Conference Participants will contribute a short (1-2 pages) report on the “State of their State”, speaking about the status of residential care services, competitive employment opportunities or sheltered workshops, the shortage of direct support professionals, guardianship concerns, activities involving state protection and advocacy agencies or DD Councils, or any legislation that involves people with I/DD and autism. 

If you can, please coordinate with others in your state, but we are always happy to present multiple submissions when they occur.

Please send your reports to us at [email protected]

A Word About Those VOR Teddy Bears...

In another longstanding tradition of the VOR Annual Meeting, Our Mary Reese has hand-crafted Teddy Bears to auction off each year.

Except, this year, there will be two bears! The first, above, is the one-time-only VOR 40th Anniversary Bear! This lovely creature will go to the individual making the highest donation to VOR during the months of May and June of this year.

The second bear will be a custom order - the winner will be able to select from a range of color options and add a name to the bear if they so desire. This bear will be given away to a random attendee of the Annual Meeting on June 11th. Just enter your name and email in the Chat, and we will choose the winner at random.

The US Supreme Court on Thursday morning ruled that nursing home residents and their survivors can sue publicly owned facilities to protect their rights under the Federal Nursing Home Reform Act.

In a 7-2 ruling, the Court upheld a lower ruling against the Health and Hospital Corporation of Marion County, which operates publicly owned nursing homes in Indiana. HHC had argued in the Talevski case that the Medicaid system’s existing oversight and discipline systems were the right avenue for aggrieved parties to seek recourse.

The ruling, experts had predicted, could have far-reaching implications for millions of people, beyond those living in nursing homes, who rely on all kinds of federal benefits managed by government partners. 

Continued

How Nursing Homes Could Face More Patient Lawsuits

By Adriel Bettelheim, Arielle Dreher, Axios, June 9, 2023

Nursing facilities that take Medicaid or Medicare could face increased exposure to negligence lawsuits in the aftermath of a Supreme Court ruling in a major patients' rights case.

The decision offered clarity on how Medicaid requirements are enforced:

• The Centers for Medicare and Medicaid Services can move to bring providers who violate Medicaid rules into compliance, through steps including the withholding of federal funds.

• The faster option is to go to court and get immediate relief. While Medicaid law doesn't authorize beneficiaries to do that, a civil rights statute known as Section 1983 has provided a way for individuals to enforce the rights guaranteed under federal programs, per KFF.

• The majority of justices agreed in this case that Medicaid law may be enforced through Section 1983.

What they're saying:

"We believe, as did the federal government, that Congress never intended to subject government-run facilities exclusively to additional legal claims for violating Medicare or Medicaid requirements of participation," said James Segroves, counsel for the American Health Care Association, a nursing home lobby.

• The ruling could create a chilling effect on the industry, said Rebecca Brommel, a partner at Dorsey & Whitney, who works with nursing homes.

• "There's a possibility that more providers, potentially those coming into the market will do a risk analysis of whether or not they want to [take] Medicaid and Medicare or be private pay only," Brommel said.

• Additionally, the ruling might change nursing homes' considerations of whether to challenge citations or regulatory violations versus just paying the associated fine, she added.

The other side:

• Patient advocates said the high court decision means Medicaid law still has teeth, Shira Wakschlag, senior director of legal advocacy at The Arc of the United States, told Axios.

• "This decision also ensures there is accountability for service providers, which has a direct impact on the quality of services and supports that millions count on," Wakschlag said.

What we're watching: 

• Congress still could amend the law and clarify that Section 1983 was not intended to be a private cause of action, which would reverse the Supreme Court's ruling.

Read the full article here

Back Issues of VOR's Weekly Newsletter are available on our web site.

Please Click Here!

Andra Brown-Lopez cares for her 3-year-old son, Ezra, who was born with Cornelia de Lange syndrome. 

"Being his mom is the best thing that's happened to me," she said. "There's just a lot that goes into taking care of him ... and you know, me and his dad are always worried when our luck is going to run out with him."

Since the program's end, anxiety and fear has gripped these families who are unsure what will happen next.

"We have a shortage, a massive shortage in the state for qualified care, and every one of these children require a lot of care," said Godfrey.

"It's not that I don't want to work, it's that I literally can't," said Brown-Lopez. "At the end of the day, he is the most important thing. A job can replace employees, and they do, often. I can't replace my son."

"Not only is there no caregiver to hire, but we're also going to have to take time away from work to be able to be here to care for our son's needs. It's just really challenging," said Aaron Jolley.

State Sen. Sara Gelser Blouin, whose committee introduced Senate Bill 91 to reinstate the paid family caregiver program, is working to get gap funding to allow families with the greatest need financial help between now and when a change goes into effect.

Continued

RELATED: ‘Caregivers are often forgotten’: 1 in 5 American adults are unpaid family caregivers

Mitchell Sikora, a member of COFAR’s Board of Directors, wrote the essay below about the importance of the Wrentham Center to his brother Stephen and himself, and submitted it to a member of U.S. Senator Ed Markey’s staff. We met last week on Zoom with one of the senator’s staff members to discuss our concerns about the future of the ICFs.

It costs money to provide all of the specialists at Wrentham who care for Stephen and his fellow residents. But as we have seen, the closures of four of the six remaining ICFs in Massachusetts since 2012 has not resulted in a promised savings to the state. Over the past decade, the corporate provider-run group home line item in the state budget has grown from $760 million to $1.6 billion. 

Moreover, We think Mitch’s list of recreational activities, both on-and-off-campus, that are provided to the residents at Wrentham debunks the myth that congregate-care facilities such as this one are institutional in character and warehouse or segregate those clients.]

My Experience with ICFs in Massachusetts

By Mitchell Sikora

I am writing to report my experience with, and my support of, the continued operation of the remaining two ICFs for developmentally disabled residents of the commonwealth: the Wrentham Developmental Center in southeastern Massachusetts and the Hogan Regional Center in northeastern Massachusetts.

My younger brother Stephen, now 72 years old, has lived since age 10 at the Wrentham facility. The Center (originally named the Wrentham State School) has provided him with protection, care, affection, and community, especially since the major upgrade of all of the then Massachusetts state schools by federal district court litigation in the 1970s and 1980s, known collectively as the Ricci case and consent decree.

Since then, the Wrentham Center has functioned effectively as a campus village of concentrated human and physical resources benefitting Stephen enormously as he has aged.

I will do my best to describe the Wrentham Center’s human resources, its physical resources, and its communal benefits.

Read the full blog here

Douglas Chafe is well loved by his family who desperately wants to give him the best life possible. His mom, Lorriane Morgan Chafe, says Douglas is 24 years old and is severely autistic. He has not been enrolled in any programs for the last two years since he aged out of school.

Lorriane tells us every parent dreads the day their loved ones turn 22. After 22 years of age, young adults like Douglas who are living with autism and other challenges have to go from a special education school to adult service programs. But, the I-Team has learned there are not enough for everyone.

Maura Sullivan is with ARC, an advocacy group for folks with intellectual and developmental disabilities. She says the situation is dire, a real crisis. "I would say it's gone really beyond crisis and we're looking at a real systemic failure for adults with autism and intellectual and developmental disabilities," Sullivan said.

The ARC estimates there are more than 5,000 in Massachusetts who are not getting all of the help they need. The state tells us, about 70% of those who turned 22 in the last three years are getting some services.

Maura understands the challenges, she is not only an advocate with ARC, she also has two sons with autism. Maura says her son is 22 and has profound autism. She wants him to have a life with dignity and independence where he can go to the bathroom and shower by himself. "These are the little things that I don't know how much other people recognize when you have a child with a more profound disability," Sullivan said.

Without programs and activities, families say many young adults who are most in need are regressing and struggling with mental health issues. Lorriane held back tears sharing that her son gets aggressive now and has been hospitalized four times. The Rockland Police and EMS had to be called, Lorriane says they have been wonderful responding to her family's calls.

So why aren't there enough placements? the simple answer is there are not enough workers or staff, in part because families say the pay is too low. Maura Sullivan explains she believes there is also a bias. "How much do we care about people with disabilities," she said. "If we care enough, we need to pay that workforce well enough." 

Continued

Pennsylvania - A Cruel Argument against Supporting Those with Intellectual Disabilities, Their Families (Opinion)

By Ann Couldridge, Executive Director of The Arc of Cumberland & Perry Counties, Express-Times via

Lehigh Valley Live, June 5, 2023

My son graduated from high school in 2021. Like many special education students, he then fell into the abyss of the adult service system for people with Intellectual Disability/Autism – a system that has been historically underfunded and understaffed.

There are no words to describe the heartache and emotional rollercoaster that happens when you first learn your child has an ID/A diagnosis. You experience sleepless nights, invest hours into research and therapies, have guilt over not focusing enough on your neuro-typical children, and feel isolated and alone, even if you have a strong family/friend support system.

School becomes your main system for services and support, and the worry and sleepless nights never truly go away. You experience the trauma of stigma – stared at in public, teased, difficulty making friends. You focus on helping your child grow and gain independence, communication, and job skills. Then graduation arrives and leaves you and your child with an uncertain future.

For many decades, people like me have fought for the same opportunities for our children that other sons and daughters have. In my opinion, it’s a value statement that this year’s proposed state budget doesn’t even scratch the surface of what people in the ID/A community need. That means our trauma continues as we realize our family – my son – is simply not a priority.

Society already stigmatizes my family. Bureaucracy and politics marginalize us even further by allowing us to flounder without adequate support.

Our son is nonverbal, has autism and intellectual disability, and has a seizure disorder. He requires 24/7 assistance. We receive only three days of professional support per week and sit on a waitlist for more support. Because of this, my husband left the workforce to care for our son. Sadly, many families like ours face this decision.

Some in our community would cruelly argue that taxpayer dollars shouldn’t support the services our son needs. To them I would say that my husband retired from the Air Force with over 20 years of service to our country. He is a veteran with a second career in corporate America. We pay taxes, vote, and engage with our community. In other words, we fulfill our civic duties. Yet, when we need something in return for what we have contributed it is not reciprocated.

We want what every parent wants: safety, security, stability, and happiness for our son. If we were to die today, what would happen to our son? His safety, security, stability and happiness would be jeopardized. And if anyone reading this thinks that’s okay, I would question their values.

Who will support our son? Who will provide routine, stability, social and medical oversight, and behavioral supports? Who will be here to allow him to live in his home and community when we no longer can? Who will protect his freedoms?

We need Direct Support Professionals (DSPs). Today, DSPs make low wages on par with unskilled laborers. I don’t understand that. It’s complicated, mentally, and physically demanding work.

We need DSPs who are paid appropriately for the work they do so there will be enough DSPs to support people like my son. He deserves the quality of life that only his family and skilled DSPs can provide. To accomplish this, our state government needs to prioritize funding so the people who need the most support can access it.

Continued

Wisconsin - In Transfers, Public Schools Often Deny Students With Disabilities

Bu Mario Koran, Wisconsin Center fro Investigative Journalism via Urban Milwaukee, June 5, 2023

After a long and frustrating search, Beth Wisniewski felt like she found a haven for her son in Penfield Montessori Academy — a Near West Side Milwaukee charter school that serves children with and without disabilities.

Wisniewski’s son, Henry, was born with Down syndrome. As he approached school age, Wisniewski and her husband toured private schools, traditional public schools and charter schools — those that are publicly funded but independently operated. But no matter the school model, the Milwaukee couple walked away with the same message: Henry was not wanted.

“Every place we went we had to explain that our son was worthy, as if we had to sell the school on our son,” Wisniewski said. “You feel less than, like there was no place that welcomed him the way he is.”

The family finally found Penfield, which centered its vision for the school on students with disabilities.

Penfield Children’s Center — a taxpayer-funded nonprofit that serves young children and infants with developmental delays and other disabilities — opened the school in 2016 for children who aged out of the center.

“(At Penfield) we’ve never had to apologize for where my child is at, developmentally. He’s truly welcomed by everyone,” Wisniewski said, pointing to the school’s teachers, therapists and specialists to support students with special needs.

But that support may vanish. Penfield’s board in April abruptly announced the school would shutter at the end of the year, citing long-term financial pressures and surprise building repair bills.

Absent a long-shot plan to save Penfield, the closure means families must find a new school next year — whether returning to their home district public school or trying to navigate a state school choice system that offers few options for students with disabilities.

Public schools must serve all students living within their boundaries, including those needing special accommodations. But not all neighborhood schools are equally staffed or resourced to meet the needs of students with disabilities.

In theory, Wisconsin families have a variety of options. But those options often exclude students with disabilities.

Such students could apply to attend a private school with the help of a taxpayer-subsidized voucher, a program that enrolls 52,000 students across Wisconsin. But such private schools also are allowed to expel a student with disabilities if officials determine they cannot meet that child’s needs.

Charter schools elsewhere have been accused of denying entrance to students with disabilities — either because they cost too much to accommodate or because their test scores could lower the school’s average. The practice is commonly known as “cherry picking” students.

Less talked about, however, is how the state’s biggest choice program, open enrollment, excludes students with disabilities. Roughly 70,000 Wisconsin students attend public schools outside their home districts through the 25-year-old open enrollment program. It allows students to apply to better-resourced public schools outside of district boundaries. But those schools can limit or deny slots for out-of-district students with disabilities.Wisconsin districts in 2021-22 received 41,554 open enrollment applications, about 14% of which represented students with disabilities, Wisconsin Department of Public Instruction data show. Schools rejected about 40% of applications in that category, with lack of special education space as the most common reason for the denials. By comparison, school districts rejected only 14% of applications from students without disabilities.

Last year, for example, one suburban Madison district announced 115 slots for incoming open enrollment students — but none for children with disabilities.

The denials tie students to their home district school, underscoring how a child’s ZIP code shapes opportunities. The effect is compounded for students with disabilities.

Over the past five decades, state funding support for special education has declined precipitously. That forces districts — which must abide by revenue caps set by the state — to take money from the regular education budget to pay for services for students with disabilities.

“Wisconsin is currently at something of a crisis point,” Juhnke said. “The funding problem is something we have not managed to move the needle on very far.”

Abigail Swetz, communications director for the state’s Department of Public Instruction, said Wisconsin’s “abysmal” funding for special education could indeed impact open enrollment decisions.

“It is my fervent hope that open enrollment decisions would not hinge on the status of a student’s (plan for additional accommodations), and yet I would be shocked if budgetary concerns did not impact open enrollment decisions. Districts need to pay their bills,” said Swetz.Some experts say the state could make the system more inclusive by following Minnesota, which prohibits school districts from rejecting students with disabilities due to resource constraints.

“This policy in Wisconsin may not be illegal, but it’s absolutely inequitable,” said Jennifer Coco, senior director of strategy and impact at the Center for Learner Equity, a national nonprofit headquartered in New York..

Continued

Download the NJ Law Center Report "Wisconsin Special Education Funding Crunch: How State Underfunding Disproportionately Harms Students in High-Poverty Districts"

[Please click on blue link to view information about the bill]

VOR SUPPORTS:

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. 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.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.

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:

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.

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.

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.



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

[email protected]

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.

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 [email protected]