October 20, 2023

VOR's Weekly News Update

Our Fall Fundraising Campaign

This is a critical time for people who support choice for families of people with I/DD and autism.

Thank you for your support!

VOR's Fall Legislative Initiative

Last week, we began a new initiative, emailing Congressional Staffers about more of the issues that our further imbalance the DD system and marginalize those with the most severe intellectual and developmental disabilities and autism.

VOR has always supported the rights of people with ID/A and their families to have the right to make their own informed choices as to the care and socialization they want. We also support maintaining and investing in a full range of residential services and employment opportunities for our loved ones.

Through that lens, we have focused on a few bills that affect our families. The issues we are covering concern the critical shortage of Direct Support Professionals and the attempts to eliminate sheltered workshops and 14(c) employment opportunities.

So far, we have sent out emails to about 300 of the 500+ congressional offices. We have scheduled to meet by Zoom with about 30 45 of the staffers who have responded to our emails. We had to hold off on sending to the remaining offices until we can catch up with the appointments that we have already made.

We have been focusing on two issues:

• The DSP Crisis, asking for recognition of these 4.7 million workers by having the Office of Management & Budget recognize them as a distinct class within the health care workforce, and by making sure that ALL DSPs are included in any bills that would increase salaries and training for this workforce, not only for those who work in Home- and Community-Based Services. We demand parity!
• The preservation of 14(c) programs and sheltered workshops. There are bills in Congress that would phase our or eliminate these opportunities, with nothing to replace them.

In both of these matters, those who administer policies for the full disability community have been neglecting and marginalizing those with the most severe and profound intellectual disabilities and autism.

NOTHING ABOUT US WITHOUT US EITHER!

For more information on our Fall Legislative Campaign,

please see our website at www.vor.net.

An opportunity to speak out in favor of 14(c) programs from the U. S Department of Labor:

Section 14(c) Stakeholder Engagement Session

The Department of Labor invites you to attend a stakeholder engagement session to share your experiences with the 14(c) program and what changes are needed to expand employment opportunities for people with disabilities.



On September 26, 2023, Acting Secretary Julie Su announced that the Department of Labor is launching a comprehensive review of the Section 14(c) program, which currently authorizes employers, after receiving a certificate from the Department’s Wage and Hour Division, to pay subminimum wages to workers with disabilities. The Department is now holding a series of engagement sessions to hear diverse views of participants on the Section 14(c) program. Input from stakeholders like you will help inform the Department’s future efforts on this important issue.

This engagement session will take place on Thursday, November 02, 2023, from 3:30pm to 4:30pm ET.

The meeting will be held in a hybrid format. You are invited to attend in-person at the U.S. Department of Labor National Headquarters in Washington, DC. Alternatively, you can participate virtually via Microsoft Teams. This invitation is non-transferable outside of your organization. However, we encourage you to extend an additional invitation to a worker with a disability who has personal experience with the Section 14(c) program and/or competitive integrated employment (CIE).

During the session, we welcome your input on important areas of focus for reviewing the 14(c) program, experiences with CIE options, lessons from states that have expanded CIE and/or prohibited subminimum wages, impacts of potentially ceasing to issue 14(c) certificates in the future, and any related issues.

To register, please RSVP to: [email protected] by October 26, 2023. In your email indicate whether you will attend in-person or virtually. We will circulate additional logistics information to registrants via email one day prior to the meeting. We are asking participants to limit their speaking time to just a few minutes for this session to ensure that the Department is able to hear from as many participants as possible.

CART and ASL interpreter services will be provided. If you need reasonable accommodations to participate in the engagement session, please contact: [email protected].

If you have any questions, please email: [email protected].

ACL To Sponsor an Alternate Session

First session Thursday, October 26, 2023 | 5:30 - 7:00 pm ET

Registration required by Wednesday, October 25, 2023

In September, Acting Secretary of Labor Julie Su announced that the Department of Labor (DOL) is launching a comprehensive review of the Section 14(c) program. The program authorizes employers, after receiving a certificate from the Wage and Hour Division, to pay subminimum wages to workers whose disabilities impact their productivity for the specific work performed. As part of this effort, DOL is launching a series of stakeholder engagement sessions to hear diverse views directly from members of the public – particularly workers with disabilities – about experience with the 14(c) program. Input from stakeholders will help inform DOL's future efforts on this important issue.

During the first stakeholder engagement session, DOL welcomes your input on important areas of focus for reviewing the 14(c) program, experiences with options for competitive integrated employment (CIE), lessons from states that have expanded CIE and/or prohibited subminimum wages, impacts of potentially ceasing to issue 14(c) certificates in the future, and any related issues.

DOL is interested in hearing the experiences of workers with disabilities and encourages worker advocates to include these examples in their remarks or to invite workers with disabilities to come share their stories directly.

The meeting will be virtual. Members of the public wishing to participate must register in advance of the meeting by October 25.

Members of the public who wish to speak during this meeting should indicate their interest in the meeting registration form. DOL is asking participants to limit their speaking time to two minutes for this session to ensure they are able to hear from as many participants as possible.

CART and ASL interpreter services will be provided. If you need reasonable accommodations to participate in the engagement session, please indicate the accommodation needed in the session registration form. Accommodation requests must be submitted by October 23, 2023.

Click here to register

A report out earlier this year from the Centers for Disease Control and Prevention indicated that 26.7% of children on the spectrum have profound autism, meaning that they are nonverbal, minimally verbal or have an intelligence quotient of less than 50.

Nonetheless, families of those with more severe needs say that their concerns are not being reflected at meetings of the Interagency Autism Coordinating Committee, a federal panel comprised of government officials and members of the autism community that is responsible for shaping a strategic plan and advising the secretary of health and human services on the developmental disability.

Now, the National Council on Severe Autism, says that needs to change. The group is calling on the IACC to devote 30% of each committee meeting to addressing the needs of those with profound autism and another 30% to those who have intellectual disability or borderline intellectual disability but don’t qualify for profound autism.

That could include focusing on medical interventions and residential options for those with severe behaviors and the need for inpatient, outpatient and crisis intervention programs, according to Jill Escher, president of the National Council on Severe Autism.

“Moving forward, to ensure the IACC is properly addressing the needs of those disabled by autism, IACC meetings should very clearly delineate the forms of autism they are addressing with their chosen subject matter and ensure proportionality,” Escher wrote in comments to the IACC. “The desperate and growing needs of those with profound autism, ID and borderline ID deserve full and urgent attention by this committee.”

To date, Escher said that the IACC has given the concerns of families affected by profound autism “a bit of lip service.” But, she said, “we haven’t seen anything substantial that can help move these fields in promising new directions, rather they recapitulate some already well-known ideas and facts, with no substantial discussion, and certainly without any sense of urgency whatsoever.”

Escher was not alone in her concerns. More than a third of the public comments submitted ahead of the IACC’s most recent meeting last week centered on the issues facing children and adults with significant needs, many of whom are nonspeaking, exhibit severe behaviors and require constant care.

Commenters included parents frustrated with a lack of available programming as well as inadequate support staff and long-term housing solutions for their children with severe autism, among other issues.

Susan Daniels, executive secretary of the IACC, did not respond to questions from Disability Scoop about whether the panel would be more deliberate about devoting portions of its meetings to the needs of those with profound autism, but she indicated that the agenda is structured to support the IACC in fulfilling its congressionally mandated responsibilities.

Continued

Follow-up Story

Massachusetts - More Oversight Needed of Residential Schools Specializing in Autism and Other Disabilities, State’s Child Advocate Says

By Liz Kowalczyk, Boston Globe - Spotlight, October 13, 2023

The state Office of the Child Advocate is pushing for stricter oversight of residential schools that serve children with autism and other disabilities, including a recommendation that the state take over responsibility for training front-line staff, amid disturbing reports of abuse.

Maria Mossaides, who heads the watchdog agency, is also proposing that the state create a new online system to centralize mistreatment and neglect complaints and other incidents, so that the half-dozen agencies involved in oversight can respond to problems faster and more comprehensively.

“Let’s be clear about what we are working toward: a better system to prevent abuse and neglect and not only that, but a system which will allow all children the opportunity to thrive,” she told the Globe.

Her comments came after a Boston Globe Spotlight Team investigation that found hundreds of students in Massachusetts taxpayer-funded residential schools have suffered harm or neglect, or been endangered — despite repeated warnings to state officials about these risks.

In a key finding, the Globe reported that the state requires no minimum pay and few qualifications for front-line workers in these state-licensed group homes and other school residences, which are run by private nonprofit organizations. Yet these employees are expected to care for children and teens with complicated diagnoses who may be nonverbal and aggressive toward themselves or others.

The Globe focused on 13 residential schools that specialize in autism, publicly documenting for the first time a wide range of abuse and neglect cases: Caregivers have beaten children and teens with autism; students have run away or engaged in other harmful behavior while employees scrolled on their phones or were otherwise preoccupied; and, in one instance, a house supervisor rubbed cayenne pepper in a student’s eyes to subdue him.

The state agencies that oversee the schools also fail to publicly report these problems, leaving parents in the dark, even though they post violations online for state-licensed day-care providers.

Continued

Massachusetts - Opinion: Why Health Care Professionals Must Back Full Care Continuum for Autism and Intellectual Disabilities

By Irene Tanzman, Kevin MD, October 17, 2023

The Americans with Disabilities Act (ADA) requires that health care entities provide full and equal access for people with disabilities. Physicians must diagnose and treat such individuals, even though they receive little or no training in medical school. It’s tricky when the patient cannot convey where it hurts or describe their pain and may refuse to cooperate with medical procedures.

Many physicians have refused to take on my 35-year-old son, who has been diagnosed with severe autism and Crohn’s disease. Surely, these refusals constitute discrimination. However, the physicians who rejected him cited a lack of resources to diagnose and treat someone with such a severe disability. Is it fair to hold physicians to these nondiscrimination laws when there is no training or resources to help them comply?

In his concurring opinion in the Olmstead v. LC case, the most famous case regarding people with disabilities and access to community services, Justice Anthony Kennedy warned about the possibility of tragic consequences for more severely disabled individuals if the ADA is misinterpreted. He said:

It would be unreasonable and a tragic event if the Americans with Disabilities Act of 1990 (ADA) were to be interpreted in a way that gives states an incentive, out of fear of litigation, to push those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.

In light of these concerns, if the principle of liability announced by the Court is not applied with caution and circumspection, states may be pressured into attempting compliance on the cheap, placing marginal patients into integrated settings devoid of the services and attention necessary for their condition.

The late Justice Ruth Bader Ginsburg stated in her majority opinion:

We emphasize that nothing in the ADA or its implementing regulations condones the termination of institutional settings for persons unable to handle or benefit from community settings. Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.

Individuals with severe disabilities were never supposed to be forced into community settings. Federal Medicaid law still requires that individuals with intellectual and developmental disabilities be given the choice of institutional or community-based placements. But under pressure from disability organizations that serve the less severe population, states often refuse to admit individuals who qualify into the remaining state-run institutional settings, even if that means they will receive inappropriate health care in community settings.

Public Intermediate Care Facilities (ICFs) or developmental centers took the place of what was once institutional settings for the intellectually disabled. These ICFs do not resemble the institutions of the 1980s.

Families with loved ones with severe disabilities need to know about this service option, and we need health care professionals to help us gain admission when it is appropriate. Health care professionals can assist us by being active politically and by making it known that they support the full continuum of care for individuals with intellectual and developmental disabilities.

Read the full article here

the author, Irene Tanzman is a VOR member and author of Abie and Arlene’s Autism War.

Missouri’s lieutenant governor is praising a Columbia sheltered workshop that’s served the area for 54 years.

Lt. Governor Mike Kehoe toured Central Missouri Subcontracting Enterprises (CMSE) on South Bearfield road on Friday. CMSE does assembly and sub-assembly, pricing and labeling, bagging and packing and other work. Mr. Kehoe tells 939 the Eagle that he’s impressed with the work ethic of CMSE’s approximately 100 employees.

“If you’re ever having a bad day, go to a sheltered workshop. It’s inspiring. The dedication that these folks have to their job, what it means to them, gives them a sense of purpose in life. They’re able to interact with their buddies and they’re providing a skill that’s valuable,” Kehoe says.

CMSE executive director Bruce Young says the unemployment rate for adults with disabilities has been 75 percent at times. Mr. Young tells 939 the Eagle that his employees take pride in their work, adding that Lt. Governor Kehoe’s visit underscores the importance of CMSE’s commitment to empowering individuals with developmental disabilities through employment opportunities.

Read the full article (and listen to the soundbites!) here

Special Series from the Kansas Reflector "On the list. Families of Kansans with disabilities go years without services, while fearing for their children’s future."



Part One:

‘Monster Under My Bed’: Disabled Kansans Wait Years for Help, with the Future Uncertain

By Rachel Mipro, Kansas Reflector, October 16, 2023

Kansas families who need Medicaid-funded support services struggle under the weight of stagnant system

Seventeen-year-old Jackson Sickels is funny and sweet.

Like the rest of the family, he is a huge Trekkie. He’s great with electronics. He’s learning how to be OK with the texture of Play-Doh. He likes music. Despite being mostly nonverbal, he likes to tell people “Hello” — as a greeting, and to be a part of the conversation.

But Jackson is also sometimes destructive. He will throw plates over the backyard fence. He will tear out book pages. He is at war with the household silverware, bending spoons and scattering them around.

Jackson never sleeps through the night, often coming into his parents’ room and jolting them awake, ripping off their sleep CPAP masks, or toppling books onto his dad.

Since his growth spurt, his strength has become difficult to manage, especially when he punches walls or gets into a destructive mood

For his parents, his lack of bathroom training is one of the most difficult issues they’ve had to face. He goes on the deck, his closet, the living room floor or wherever is convenient. And he wipes himself off with whatever he can find.

Almost every day, Jeri Sickels has to scrub her son’s excrement out of the carpet.

Jackson was born with an intellectual disability and autism. His family waited for some form of state help for years, enrolling him on the ever-stagnant waitlist to receive Medicaid-funded support services, known as waivers, from the state when he was 3 years old. Fourteen years later, the family has finally been enrolled.

“You just go with that,” Sickels said. “Because you don’t have any power. And when your child is in desperate need for something, and you know they will be long term but they’re not actively suffering, it’s something that you just kind of hunker down and go into survival mode.”

People with intellectual or developmental disabilities who want to receive assistance, known as intellectual and developmental disability waivers, are placed on a waiting list supervised by the Kansas Department for Aging and Disability Services. The support waivers cover a variety of much-needed services, such as in-home care and tuition.

Continued

Part Two:

‘Typical Lip Service:’ As Medicaid Waitlists Grow, Kansas Parents see No Path Forward

By Rachel Mipro, Kansas Reflector, October 17, 2023

The Elskamp family feels “laughed off” by the state.

The family enrolled their now 22-year-old daughter, Sheridan, on a waitlist for state Medicaid-funded waiver services in 2013. At the time, they were told it would be a seven- or eight-year wait, a timeline that would coincide with Sheridan’s graduation from high school.

When Sheridan neared the end of high school in July 2022, the Tecumseh family reached out to her case manager. They were shocked when the case manager told them the waitlist was now 10 years or longer.

“We lead our lives, we got her through school thinking this will work out great, she’ll transition out of high school about the same time that she gets waivers, and now here it is 2023,” said Rick Elskamp, her father.

“What are we to do?” Elskamp said. “We’re working parents — we both work full time. We’re not wealthy. We depended on this benefit that we signed up for in 2013 to help pay for her services and to find a place for her to go to day service.”

In a series of stories, Kansas Reflector is examining the suffering imposed by policymakers on thousands of disabled Kansans and their families who spend years waiting for the state’s Medicaid-funded services.

The support, known as the intellectual and developmental disability waiver, covers a variety of needed services, such as in-home care and tuition. People with intellectual or developmental disabilities who want to receive assistance are placed on a waiting list supervised by the Kansas Department for Aging and Disability Services.

Funded by an approximately 60-40 federal-state match, with enrollment based on available funds, waiver spots typically only open up when someone dies or moves between states. Without these services, people with intellectual or developmental disabilities often have no state help after leaving school programs and education services at the age of 21.

But the waitlist has been stagnant for years.

Sheridan is one of more than 5,000 Kansans waiting for help.

Continued

Part Three:

‘A Lack of Imagination’: Kansans ask Lawmakers to Stop Dithering over Disability Supports

By Rachel Mipro, Kansas Reflector, October 18, 2023

When she was helping other Kansans apply for the physical disability assistance during her long career as a health care service provider, Elaine Legitt would grow frustrated.

Now, fighting off stage four cancer and using waiver services herself, she is just depressed.

“I’ve been frustrated for years, to be honest,” Legitt said. “Going through it personally, it really affected me. In a way, it really ticked me off and I actually got really depressed. I’m waiting this long, and then the whole time I’m trying to figure out, is the cancer spreading, has it already spread?”

The Chanute resident applied for the Medicaid-funded support, known as a physical disability waiver, in early 2022 after she was diagnosed with endometrial cancer in October 2021. The cancer that has now spread to different places in her body, including one of her lungs. While she was fast-tracked for services because of her heightened need, she still had to wait three months for services — a wait that felt endless.

Any longer, Legitt said, and she would have been forced out of her home, because her disabled husband, who is also on the waiver, couldn’t take care of her.

“You feel like you should give up because it’s taking forever,” Legitt said. “When you’re in crisis, you need it now. You don’t need it (in) three, six months.”

In a series of stories, Kansas Reflector is examining the suffering imposed by policymakers on thousands of disabled Kansans and their families, who spend years waiting for the state’s Medicaid-funded services.

The support waiver covers a variety of much-needed services, such as in-home care, but the waitlist has been stagnant for years. Thousands of Kansas families have been waiting, often with no clear timeframe or communication from the state. 

Continued

Illinois - Leader Haas Joins Leader Charlie Meier in Urging “Help Protect Us and Improve Our Home” Plan to Reform State Developmental Centers

By Silence DoGood, The Southland Journal, Ocober 19, 2023

By Silence DoGood, The Southland Journal, Ocober 19, 2023

 In response to recent reports of abuse at the Shapiro Developmental Center in Kankakee, House Assistant Minority Leader Jackie Haas (R-Kankakee) is joining Assistant Minority Leader Charlie Meier (R-Okawville) in supporting his legislative plan to make significant reforms at Illinois developmental centers.

“I, like many people in the 79^th District and Kankakee area, was extremely disturbed by the reports and footage of abuse at the Shapiro Developmental Center,” said Leader Haas. “I’m joining Leader Meier to advocate for this legislation to make these critically needed reforms for our state’s most vulnerable residents. These centers are their homes, and they deserve to be treated with basic dignity and compassion. I will work with Rep. Meier to ensure these residents at the Shapiro Center and across Illinois receive the best quality care that is administered with respect and empathy in the places they call home.”

Leader Haas is a co-sponsor of three pieces of legislation from Leader Meier’s “Help Protect Us and Improve Our Home” plan: House Bills 1298, 2998, and 3545. This plan was released by Leader Meier in February 2023 following reports of neglect and abuse at the Choate Mental Health and Developmental Center in southern Illinois. The plan intends to make improvements at Illinois developmental centers and work with the Illinois Department of Human Services (IDHS) and elected officials to create safe and healthy spaces these residents can call home.

In addition to the three pieces of legislation Leader Haas is co-sponsoring, the “Help Protect Us and Improve Our Home” plan has the following suggested improvements to be made by IDHS:

• Install cameras in common areas
• Implement ongoing staff training
• A mass hiring of qualified staff to help
• Track staff incidents by location and trends
• Increase administrative and security inspections
• Improve overall accountability of staff performance
• Remind employees if they see something is wrong, report it
• Increase the amount of active treatment and activities for residents
• Encourage and welcome parents/guardians visiting their loved ones
• Assign an interim director or assistant director to Choate Developmental Center
• Reevaluate the Office of Inspector General reporting system as it currently operates

Read the full article here

Gwen Collman estimates that her 31-year-old son has had 150 paid caregivers since he was two years old, and that she has recruited about 100 of them. 

David, one in a set of triplets and one of Collman’s four children, is deaf, has cerebral palsy, and cognitive impairments. 

People who work with him are paid through a Medicaid program called the Innovations Waiver. The program pays for caregivers who provide the assistance to people with intellectual or developmental disabilities that allows them to live in community settings. 

But it’s hardly a sure remedy. 

Space in the Medicaid program is limited, and there aren’t enough “slots” for people with disabilities who could qualify. The waiting list has more than 17,000 people on it as of August, according to the state Department of Health and Human Services. Even when people are approved for services, there aren’t enough workers to actually do those jobs. The worker shortage is so bad that it’s commonly called a crisis. 

Private provider agencies are supposed to recruit and hire workers, then assign them to people in the program. But often, parents end up doing the recruiting, then asking agencies to hire the people they find, as Collman did. The private agencies have contracts with regional mental health offices to supply workers for people with disabilities.

A meeting in Chapel Hill last weekend of a grassroots group called Parent Advocates for Adult Children with I/DD centered on the frustrating shortage of direct care workers.

Direct care work doesn’t pay much. And it is employment without a career path.

“I’ve seen low-paid people who have put their heart and soul in working who can’t pay their bills, who have to get food stamps themselves,” Collman said. 

The legislature included in this year’s budget money to help increase wages of direct care workers by $6.50 an hour over the average hourly wage. 

Continued

Indiana Families Concerned over Possible Cuts to Autism Services

By Karen Campbell, WTHR NBC News 13, October 18, 2023

Chanel McClure said it took about a year before she was able to get her 3-year-old son, King, enrolled in therapy.

"He was having behavioral issues, elopement, running away. He was very overwhelmed and overstimulated in public. He would not interact or play with any children or adults. He would shy away from them," McClure said.

Since then, McClure said King has made tremendous progress.

"He's been there six months now, but I've seen improvements in communication in the first two months," McClure said. "It's really been great to communicate with him."

McClure and thousands of other Hoosier families are worried about a proposed Medicaid reimbursement rate that could impact a type of therapy for their kids.

That therapy is called applied behavioral analysis, or ABA.

Families of children with autism say cuts to the program would be detrimental.

"ABA is very costly, and my family would not be able to pay out of pocket for such an essential service, and that's why it's so important that you set a rate that is sustainable to facilities," McClure said.

The State Budget Committee is expected to review rate cuts later this month, less than a month before a Medicaid oversight hearing takes place.

"Families and providers who reached out to us felt that they just hadn't had enough of opportunity to state their case," said Carl Ellis, CEO of Indiana Minority Health Coalition.

Families of children with autism receiving SBA therapy want lawmakers to reschedule the meeting so they can voice their concerns.

Continued

Virginia - Mother Says She's Worried after Virginia Makes Significant Changes to Medicaid Requirements

By Elizabeth Holmes, WTVR News CBS 6, October 19, 2023

Two-year-old Ares Cason is a little guy with a lot of energy. He loves to play, something his mother, Leah Bradley, was prepared to never see happen.

"He was born at 27 weeks. He weighed two pounds," Bradley said. "His NICU course was complicated by a bilateral brain hemorrhage."

In a short span of two years, Ares has survived a brain hemorrhage, cardiac arrest, and countless other medical scares. He was diagnosed with asthma, sleep apnea, and severe autism, unable to speak or chew solid foods.

His list of diagnoses is long.

"I have pretty much lived in survival mode since he was born, especially when I had to resuscitate him with my own hands. That was probably one of the worst days of my life. So since then, it's constantly wondering, is he, is something going to hurt him? Is he going to die? Is he going to stop breathing in his sleep from the sleep apnea? I'm constantly in survival mode," Bradley said.

Bradley supervises her son nearly 24/7, unable to sit down, on edge, she said, almost every second.

"I probably get about 12 hours of sleep a week, if I'm being honest," she said.

Throughout the pandemic, Bradley was allowed to be paid as a Legally Responsible Individual, able to get paid to provide care to Ares each day. Bradley said she made roughly $1,400 a month doing so, using the money to support herself, Ares, and her 16-year-old son.

"It's paying for basic stuff. It helps me not have to work full time, which allows me to be home for him and not put him through the emotional rollercoaster of having a revolving door of caregivers to come in," Bradley explained.

On September 9, Virginia's Department of Medical Assistance Services announced it'd be changing payment requirements due to the end of the COVID-19 pandemic, saying parents can only be paid as Legally Responsible Individuals if they've exhausted all other options of care, like hiring a personal care attendant, or 'PCA.'

Bradley said considering how medically complex Ares is, she's never been able to find the perfect assistant to help with Ares. The family must follow very specific medical instructions and attend hours of appointments each week. Bradley said some assistants wouldn't be able to give Ares some of his medications because they're prescribed by a doctor.

"Finding somebody to even come and go through, giving him meds, which they can't do anyway, but he needs his medicine, so I have to have somebody here to give him medicine, on top of having a PCA here to help with feeding, toileting, diapering, it's just too many hands in the pot for an autistic child," Bradley explained.

"Families are left wondering, 'Well what am I going to do?' I have to go back to work full-time. I have to find providers. A lot of these children like Ares can't go to daycare. Daycare will not take children who after a certain age still need to be toileted, need to be fed, who need medications," she said.

Families must be able to prove they meet the new list of requirements in order to be paid as Legally Responsible Individuals by November 11.

Continued

The Burdens of Supported Decision Making will fall Primarily on Women

Guest Post by Lara Dionne, The COFAR Blog, October 17, 2023

As one of the parent-guardians of a young lady who is 18 years old and has Level 2 autism and moderate intellectual disability, I am very concerned about bills pending in the state Legislature to authorize Supported Decision Making (SDM) in Massachusetts (S.109 and H.201).

SDM would enable persons with developmental disabilities to sign agreements with informal teams of supporters, who would “help” them make decisions about all aspects of their care.

SDM is billed as a voluntary alternative to guardianships of those individuals, who are referred to as the “decision makers” in SDM arrangements. In reality, many proponents of SDM want to eliminate guardianships altogether.

The problem is that decision-making capacity (i.e., legal competency) should be included somewhere in S.109/H.201, and it is not. The bills need to recognize those whose disabilities render them unable to make informed, reasonable decisions in their best interest due to deficits in cognition related to developmental disability, intellectual disability, or a mental health condition which impairs sound judgement.

The legal competency issue is obvious and a blatant oversight. The bills’ proponents can’t have failed to recognize that there are some people for whom the SDM process would be entirely inappropriate. Those individuals need guardians, and in most cases, those guardians are their mothers, sisters, and daughters.

SDM will further destabilize families that are already under stress and take additional agency away from the very people the state is relying on to fill the gaping holes in their disability services infrastructure: primarily women.

SDM is a means to the end that the state appears to be seeking. In most cases, the “decision-maker” will choose the course recommended by his or her SDM “team.” That team is likely to consist of providers and Department of Developmental Services (DDS) personnel, in addition to family members.

As a result, it is likely that few “decision-makers” will choose congregate care facilities, and many may choose the lowest-cost option — their family home. Even now, well over half of adults with autism live with family caregivers, according to the Children’s Hospital of Philadelphia’s Center for Autism Research.

In case the obvious needs to be stated: It is still overwhelmingly women who take on the burden of caregiving for the disabled in the family home.

Women comprise just over 80% of stay-at-home parents. The Institute on Aging reports that 75% of all caregivers are women, and that female caregivers may spend as much as 50% more time providing care than men. Further, research completed at Drexel University found that 30% of families with a child with autism had to reduce working hours to care for their child.

Given the first two statistics, what do you suppose the likelihood is that those leaving work to provide care for autistic family members are women? Pretty darn high, I would say.

I would also love to know how many of these disabled individuals are cared for by their grandmothers because the state already burned through their parents with the weaponized incompetence that passes for disability services for this population. However, I suspect this is a set of statistics the state does not want to gather for many reasons.

My concern is that S.109/H.201 is yet another bit of health and human services legislation that claims to give autonomy to one oppressed class of individuals by taking away the autonomy of another oppressed class whose members will be expected to suffer the financial fallout and complete any labor associated with it: women.

Continued

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

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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.



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