December 29, 2023

We Wish All of our Families and Friends

a very

Happy and Prosperous New Year!

VOR's Weekly News Update

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run by families of people with I/DD and autism

for families of people with I/DD and autism.

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This Week's News:

NOTE: The first three articles were sent to me by members who provided comments that I have posted beneath the article in question. The rest of the comments are mine. I just couldn't resist.

Lawmakers With Disabled Children Find Common Ground in Divided Congress

By Kayla Guo, The New York Times, December 26, 2023

“We may not vote together on hardly anything, but there’s a deeper connection,” said Senator Eric Schmitt, Republican of Missouri, of a Democratic colleague whose child also has a disability.

One year into his first term in Congress, Senator Eric Schmitt, Republican of Missouri, has sought to find his lane while learning how multilayered relationships in Washington can be.

Mr. Schmitt, a towering figure at 6-foot-6, is a hard-right conservative and staunch defender of former President Donald J. Trump. He introduced 11 bills his first year in Congress, including bills to cut diversity and inclusion offices across federal agencies and to require agencies to roll back three pieces of regulation for each new one. As the Missouri attorney general, Mr. Schmitt signed on to a lawsuit seeking to overturn the results of the 2020 election, and he filed suits against China over the coronavirus and against school districts for their Covid-19 mask mandates.

Even as he has connected with his Senate peers on the right, however, Mr. Schmitt has also forged a deeper kinship with an unlikely colleague: Senator Maggie Hassan, Democrat of New Hampshire.

They have little in common in terms of politics or legislative priorities. But both have children with disabilities: Ms. Hassan’s son, Ben, 35, has severe cerebral palsy. Mr. Schmitt’s son, Stephen, 19, is nonverbal and has tuberous sclerosis, epilepsy and autism.

“You have that special bond that is sometimes hard to explain to other people,” Mr. Schmitt said of his relationship with Ms. Hassan. “We may not vote together on hardly anything, but there’s a deeper connection.”

At a moment of stark polarization across the nation, Mr. Schmitt and Ms. Hassan are among several lawmakers in Congress with disabled children who have bonded over that shared circumstance. The common ground these lawmakers have found is a reminder of the human elements of serving in Congress: the time spent away from family, the importance of relationships on Capitol Hill and the personal perspectives lawmakers bring with them to Washington that shape their political and policy agendas.

“It’s something that you hear people in public office say a lot, but we actually have a lot in common,” Ms. Hassan said in an interview. “We have similar family experiences. We’re struggling with a lot of the same things, and I hope Americans will remember that and stay focused on it.”

For Mr. Schmitt, his son’s needs shaped one of his earliest moments in office: figuring out how to get the family to the Capitol for his swearing-in. Air travel is challenging for Stephen, so the family packed into their S.U.V. and drove the 12 hours from the St. Louis area to Washington instead. Mr. Schmitt and Ms. Hassan have discussed how she has navigated those sorts of challenges since she joined the Senate, and the importance of sharing as many experiences as possible with their children.

While serving in the Missouri Senate, Mr. Schmitt notched several legislative victories for people with disabilities. He led bills that allowed families of disabled children to set up tax-free savings accounts to cover future housing, education and other expenses; forced insurance companies to cover a type of behavioral therapy for autism; and legalized CBD oil for medicinal use in epilepsy patients.

The U.S. Senate poses different legislative challenges, plus the additional requirement of being away from home for much of the year. “That is the toughest part of the job, no doubt,” Mr. Schmitt said.

By nature, the Senate is a clubby place known for bipartisan deal-making more than the House, and senators tend to get to know one another well. “If you’re willing to work with people, and you’re not a jerk, there’s a lot you can get done,” Mr. Schmitt said.

Ms. Hassan, who has been in the Senate since 2017, has focused on expanding support for home and community-based care. Her son, Ben, first inspired her to run for office and pursue disability rights advocacy.

Ben “is a funny and smart and engaging person,” she said in an interview. But his condition means he uses a wheelchair and cannot speak or feed himself, and he “needs one-on-one assistance with every aspect of daily life.”

“I realized during Ben’s childhood and early schooling not only the importance of advocating for him in those environments,” Ms. Hassan said, “but also the difference that advocates and their families and their legislative champions and sometimes lawyers have made in moving the ball forward, and really making inclusion a priority in a democracy where everybody is supposed to count.”

She and Mr. Schmitt have shared in their hopes and concerns for the path toward greater inclusion, though their policy visions differ. They have both felt the “pit in your stomach when you worry about how you’ll make it home to do your caregiving shift, or what lies ahead for your children once you age,” she said.

In the House, Representatives Cathy McMorris Rodgers of Washington and Pete Stauber of Minnesota, both Republicans, have children with Down syndrome. Ms. McMorris Rodgers founded the Congressional Down Syndrome Caucus after her son, Cole, 16, was born.

“You almost feel like you’re family because there’s an understanding, a shared experience,” Ms. McMorris Rodgers said about other lawmakers with disabled children. “It definitely builds a relationship. And there’s an immediate desire to work together.”

Mr. Stauber, who had a Barbie doll with Down syndrome displayed in his Washington office, teared up during an interview as he recalled how his son Isaac, 21, would greet him every day when he got home from work as a police officer. Isaac, one of Mr. Stauber’s six children, has “severe and profound” Down syndrome. He graduated from high school in the spring, and, like his father, loves ’70s and ’80s rock music.

“There are colleagues on the other side of the aisle that politically I may not agree with,” Mr. Stauber said. “But there is no daylight between us in supporting our special needs community.” He added: “We’ll give each other a hug when we need it. It’s a good common ground.”

That mutual understanding has at times supported disability-related legislation. In 2014, Congress passed a bill spearheaded by Ms. McMorris Rodgers that allowed disabled people and their families to contribute to a tax-free savings account modeled after Section 529 education plans.

In recent years, lawmakers have introduced several bills that aim to aid people with disabilities, some with bipartisan support. A proposal led by Ms. McMorris Rodgers would integrate people with disabilities into the work force and ensure they are paid the same minimum wage as workers without disabilities. Ms. Hassan has continued her efforts to increase funding and support for home and community-based care, and she and Mr. Stauber are leaders on legislation to fully fund the federal government’s unmet commitment to pay for a portion of the nation’s special education expenditures.

But Ms. Hassan holds out hope.

“Change and inclusion takes time and consistent effort, but then when we make it, we make it together,” she said.

Read the full article here

Comment from Dawn Kovacovich, of Minnesota:

It is unfortunate that at no point in this article was it mentioned that in order to properly provide for the entire disability population, policy makers need to come together to agree on a full continuum of care options, for both residential and employment/day activity needs. There were multiple references to “inclusion”, without mentioning that some severely disabled people are best served in highly specialized environments and/or can only work with wage accommodations that match their unique productivity level.

The only references towards employment supports were once again, “inclusion “ and elimination of the special wage option (inaccurately dubbed “subminimum” wage). It would be so refreshing to read an article that describes the fact that all disabilities are not one and the same and that their needs and wants are not the same. Lawmakers with loved ones who have disabilities should work toward EXPANDING support options instead of the exhausting false narrative of eliminating support options.

Additional comment:

The politicians mentioned here do share a bond. They also share a belief that the choice they have made for their loved one is the only choice that is correct for anyone with I/DD or autism. They have closed their minds to the idea that there are people far more severely disabled than their children, or that some families don't have as many options available to them as members of the Senate or the House of Representatives might.

When we speak of educating Members of Congress about our loved ones, about our need for a full continuum of care and a full range of residential and employment options, this is exactly where we need to start. Despite years of speaking with people like Senator Bob Casey, Rep. Bobby Scott, Rep. Debbie Dingell, Rep. Jahanna Hayes, and several of the people named in this article, it is clear that we have a great deal more work to do to bring understanding to those who believe that supporting CHOICE means supporting the choices that they have made for themselves and their families.

Thousands of Mass. Children Diagnosed with Autism are Becoming Adults. Many Families Find the State Unprepared to Help. 

By Liz Kowalczyk, Boston Globe Spotlight Team, December 29, 2023

Thousands of Massachusetts children who have been diagnosed with autism in recent years have entered a daunting new phase of life: adulthood.

And those with the most severe forms of the disorder are up against extraordinary challenges. Despite years of warnings about the inevitable explosion in need, they are encountering a state group home system for adults that is hobbled by poor staffing and struggling with allegations of abuse and neglect, and that many find is simply unprepared to care for them.

A record number of children with intellectual disabilities or autism turn 22 years old this year and qualify for adult services with the Department of Developmental Services. The number of people reaching this milestone each year has doubled since a decade ago to more than 1,430, driven by the tremendous increase in children with autism. Autistic children now account for more than half of these new adults.

“There has been very little planning to prepare for this,” said Michael Borr, the parent of an adult son with autism and former chairman of Advocates for Autism of Massachusetts. “I can go back to the speeches I made every year, and I would talk about the tsunami that is coming. It’s not coming any more; it’s here. We are in a crisis.”

Families with severely disabled adult children desperately depend on the state for help. Those with the most significant health and safety challenges, including autistic adults who are nonverbal and engage in self-injury or aggression, can qualify for group homes.

The Department of Developmental Services, which licenses privately run group homes and also runs homes itself, acknowledged in a report to the Legislature last year that its ability to provide housing to autistic adults is “extremely limited” because they are “very different” from the agency’s traditional clients.

The department has historically provided housing predominantly for intellectually disabled adults, who generally don’t have the social and behavioral challenges of those with profound autism, which requires specialized training to manage. The department currently funds group home placements for 418 autistic adults, according to the agency.

A Globe Spotlight Team investigation into residential schools specializing in children with autism found that hundreds of disabled students under 22 have been harmed or neglected in recent years at school residences with low-paid and poorly trained caregivers amid high turnover.

The risks are equally as great when these children enter adulthood. Massachusetts group homes for adults had more than 4,000 vacancies among direct care staff, more than a quarter of the necessary workforce, according to a survey earlier this year by the Association of Developmental Disabilities Providers, which represents most of the agencies that run the homes. Day programs have also been hit hard.

“We’ve got a screaming problem with staff who don’t have enough training,” said Catherine Boyle, a parent of an adult autistic son and a housing expert. “Guess what staff without enough training do? They quit. These huge vacancy rates are hitting at the same time the autism wave is hitting.”


Comment from Irene Tanzman of Massachusetts:

"She left out the part that there are openings in the ICF, but we can't access them."

Additional comment:

Again, we need to educate the media, as well as our elected officials, about the value of Intermediate Care Facilities and the need to reinvest in the ICF system.

Could Developmentally Disabled Face Return to Institutions If Group Homes Can't Pay Staff?

By Nancy Cutler, Rockland / Westchester Journal News, December 26, 2023

What happens when nonprofits that support people with intellectual and developmental disabilities can't recruit and retain enough staff to provide daily care for the 140,000 vulnerable New Yorkers who can't function without it?

It's not a theoretical question, say agency leaders like Randi Castro-Rios, CEO of Jawonio, which operates group homes and programs throughout the Hudson Valley.

Leaders in the human-care sector, advocates and families are demanding that the state finally increase pay for workers, known as Direct Support Professionals. Pay rates for these nonprofit workers are set by the state. Agencies are reimbursed for their services by the state Office for People with Developmental Disabilities.

The only way to significantly boost those workers' wages is to add money for their pay into the 2025 state budget.

At a recent legislative forum for state officials, Castro-Rios laid out the math:

  • DSPs earn barely above minimum wage. They often work two jobs or consistent double time to afford to live in one of the most pricey real estate markets in the country.

  • About half of all service providers statewide say they have had to cut programs because they can't hire enough workers. And even after this downsizing, there's a statewide 25% job vacancy rate for DSPs.

During a meeting at Jawonio's New City headquarters, Rios-Castro told members of the state Senate and Assembly that the alternative is one no one wants: going back to congregant facilities like the notorious Willowbrook State School and Letchworth Developmental Center that warehoused people with disabilities until the neglect there was exposed and New York led the way toward reforms.



Once again, the threat of Willowbrook. As if Willowbrook were still there, lurking malevolently, with thousands of evil institutional beds available, just waiting for the state to slip up so that it can reach out and snatch up all of the people who had been living in group homes. How very Stephen King.

No one is going to institutions, at least not good institutions, because New York got rid of all but a very few private ICFs. And if NYS OPWDD can’t get staff for group homes, how could they possibly be able to find staff for these institutions?

Washington - For WA Adults with Developmental Disabilities, Programs Beyond High School are Scarce

By Laura Demkovich, Washington State Standard, December 26, 2023

When people with intellectual and developmental disabilities graduate high school, many families are left wondering what job, education and social opportunities will be available as their loved ones transition into adulthood.

In Washington, options are limited. This can leave people with disabilities isolated at home, and caregivers without any relief.

Advocates are turning to the Legislature with the hope of changing this.

“What we’re looking for is for the state to provide these services and make them more broadly available for people in the state who may not be in a position to pay for them privately,” Jim Wellman, a parent advocate with a daughter with intellectual and developmental disabilities, told a legislative committee earlier this month. 

The state offers some day programs covered by Medicaid. These include work, education and volunteer opportunities, as well as respite services, which allow people with disabilities to stay in a staffed residential setting to give their usual caregivers a break.

But only 38% of the Developmental Disabilities Administration’s clients over the age of 21 use these services, said Stacy Dym, at the Arc of Washington State, a nonprofit organization that advocates for people with intellectual and developmental disabilities.

Dym explained that limited hours, a lack of providers, and difficulties families face finding services are all barriers to people accessing this type of support.

She said Washington’s Developmental Disabilities Administration needs to create more adult day programs with additional hours – ideally providing at least 20 hours a week of programming for each eligible person.

Moving in this direction could require the state to add new covered services under waivers it has from the federal government for how it uses funding from Medicaid, the program that provides health coverage to people who are poor or disabled.

“These opportunities are missing from every element of design in Washington’s waiver system,” Dym added.

Wellman said providers of these services do exist in Washington, but they are often funded through charitable donations or by families paying out of pocket.

Providers also often lack proper funding and staff, which can lead to long waitlists.



Washington voted to phase out sheltered workshops a few years ago. Most of our readers can pretty much guess what further comments we might make here....

60% of I/DD Providers Thinking About Shutting Down Services

By Chris Larson, Behavioral Health Business, December 22, 2023

The industry outlook for community-based intellectual and developmental disability (IDD) providers worsened in 2023.

Poll data from the nonprofit advocacy organization American Network of Community Options and Resources (ANCOR) shows that 60% of professionals polled at 581 organizations that operate in 45 states and the District of Columbia said that their organizations were likely to shut down programs, barring a shift in the high rates of turnover and shortages plaguing the sector.

“Notably, this is one of the few measures where the outcome in 2023 was actually worse than the outcome in 2022 — 9% worse, to be precise — which reinforces the fragility of gains that have been made in other areas,” the organization’s survey report states.

The report focuses on the shortage of direct support professionals (DSPs), a division of professions within the classification of direct care workers that with with IDD patients. DSPs’ duties may include caregiving. But they often go far beyond that, enabling their patients to live more dignified lives.

It’s hard to get a grasp on the size of the DSP workforce. The U.S. Bureau of Labor Statistics doesn’t track this occupation; multiple occupations may do DSP work. A close equivalent are home health and personal care aides. There were about 3.72 million in this field in 2022, according to BLS.

Other data shows that the shortage is not likely to improve in the near term based on demand dynamics.

Citing another report, ANCOR states that the demand for home-based care services is expected to increase by 35% in the next decade and add 1 million jobs for direct care workers to fill, including DSPs. All of which leaves a relatively small workforce for the IDD sector.

Here are other key stats from the survey report:

— 95% report “moderate or severe” staffing shortage in the previous year

— 77% turned away new referrals for lack of staff

— 72% struggled to establish quality standards due to staff challenges

— 54% work in areas with “few or no” similar service providers

For organizations that offer only IDD case management services, 75% reported they had difficulties connecting people with services because of a lack of local availability.

The report places unambiguous blame on the cause of the shortage: “underinvestment in Medicaid.” This puts DSP providers at a disadvantage compared to other industries with similar wage rates and structures, like retail and fast food. But unlike these industries, DSP providers and similar organizations are often forced to take payments set by public bodies rather than based on market dynamics.

“Providers want to pay more, but lack the funding needed to do so, leaving the median direct support professional with an hourly wage around $14.50,” the report states. “In turn, providers at the national level are left to grapple with turnover rates hovering around 44% and vacancy rates in excess of 20%.”

The report proposes three initiatives to aid the workforce situation and bills in Congress that could enact these ideas.



Unfortunately, the report goes on to suggest that HCBS services are the only ones affected or worth investing in...

Letter on Disability Agency’s Continuing Abuse Wins November Golden Pen Award

By The Editorial Staff of the Post and Courier, December 27, 23

When a recent audit of the S.C. Department of Disabilities and Special Needs uncovered lax abuse investigations and flawed hiring practices at the agency that cares for some of our state’s most vulnerable citizens, the news brought back the nightmare that one family went through in the early 2000s.

A Nov. 10 letter by Nancy L. Banov, the mother of an autistic daughter abused by a caretaker, is the winner of the Golden Pen award.

Ms. Banov wrote that the Nov. 3 editorial, “Abuse at SC disability agency demands immediate response,” brought back horrendous memories for her that she thought were long-buried.

She recounted how her daughter was severely abused multiple times in the early 2000s while residing in an autism group home operated by the Department of Disabilities and Special Needs.

“I still have the photographs of her bruises and rope burns,” Ms. Banov wrote of her daughter. “One caretaker accused of harming Pamela escaped censure despite extensive evidence and was only later placed on leave after she was accused of injuring a young man in a different group home. After more than a year, she was not only given her job back but also awarded more than $82,000 in back pay.”

The state agency is responsible for caring for South Carolinians with intellectual disabilities, people who can’t protect themselves and often can’t even complain.

A review of the records of employees who had been fired in a single year found five whose personnel files incorrectly showed they resigned for “personal” reasons, including one who was arrested for abusing a patient, which means another agency or private employers could unknowingly hire dangerous employees.

To do something about the rampant abuse of children with special needs after her daughter’s experience, Ms. Banov and her husband worked closely with the Charleston County legislative delegation to require the S.C. Law Enforcement Division to investigate all criminal reports of alleged abuse and enforce the protection of people under the care of the state.

In May 2006, the initiative resulted in the passage of S.1116, the Vulnerable Adult Abuse Act of South Carolina, then considered one of the nation’s most forward-looking and comprehensive bills ever passed in the field.

Since then, however, the funding and execution of the bill’s mandate have fallen short, with tragic consequences.

“My heart aches for the families of those unprotected citizens still under the care of the South Carolina Department of Disabilities and Special Needs,” Ms. Banov wrote. “It is unconscionable that our state government still permits the continued abuse of our most vulnerable citizens under its care.

Ms. Banov, 91, lives in Atlanta, where she and her two sons continue to care for her daughter.

Read the full article here


Nancy Banov is a long-time member of VOR, and the author of "We Have A Name: A Mother's Search For Answers", one of the books included in our VOR Book Club's Distinguished Author's series. It is availble on Amazon.  Click Here

VOR Bill Watch:

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


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.


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.


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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