December 1, 2023

VOR's Weekly News Update

VOR's December Quarterly Networking Meeting

On Zoom

Monday, December 11, 2023

7 pm Eastern / 6 pm Central / 5 pm Mountain / 4 pm Pacific

Open to All

What Matters Most to Your Family?

Please join us for our next Quarterly Networking Meeting, when we ask our families about their priorities for our advocacy in 2024.

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VOR's Winter Fundraising Campaign

It is December, and we are behind on our

year-end fundraising.

This is a critical time for all of our fundraising efforts.

Please help us, so that we may continue to help you.

Thank you for your support!

Let's start December with some good news -

One of the most positive videos we've seen in ages!

Opinion: Do Disability-Specific Settings Violate the ADA?

By Amy S.F. Lutz, Psychology Today, November 28, 2023

Following close behind last month’s announcement by the Department of Labor (DOL) of a “comprehensive review” of 14(c), the program that allows some agencies to pay a subminimum wage to a subset of largely intellectually disabled participants, the Department of Justice (DOJ) has waded into the debate, issuing new guidance on “Employment and Day Services for People with Disabilities.”

I find it to be a perplexing, frustrating, and scary document that opens with the threat of litigation: “State and local governments that fail to provide services to people with disabilities in the most integrated setting appropriate to their needs may be failing to comply with Title II of the Americans with Disabilities Act (ADA).”

Could Disability-Specific Settings Be at Risk?

What's at stake here may not just be the subminimum wage; it’s all disability-specific services, including day and residential settings designed to serve more than three people. These include but are not limited to farmsteads, campuses, intentional communities, and all facility-based day programs. Such larger models are often preferred by family members of profoundly impaired individuals with behavioral challenges—including aggression, self-injurious behavior, and elopement—who require more structure, stability, and specialized care than can typically be provided safely in small, dispersed settings.

But what does “appropriate to their needs” mean, exactly? Or “may be failing to comply”? And is integration really a “mandate,” as the DOJ states in the title of this new guidance?

Disability-Specific Settings Don't Violate the ADA

No, it’s not—as the guidance itself makes clear immediately after the statement cited above. It even cites the qualifications for the right to community treatment articulated in the 1999 Olmstead decision—most notably, that “the affected persons do not oppose community-based treatment.”

In fact, the Justices were very much aware that inclusive settings are not appropriate for, nor desired by, everyone. As Justice Anthony Kennedy wrote, in a concurring opinion, “It would be unreasonable, it would be a tragic event, then, were the Americans with Disabilities Act of 1990 to be interpreted so that States had some incentive, for fear of litigation, to drive those in need of medical care and treatment out of appropriate care and into settings with too little assistance and supervision.”

So the Department of Justice knows perfectly well that disability-specific settings do not violate the ADA—and they do concede, at the end of the new guidance, that “state and local governments are not required to provide community-based services to individuals who oppose receiving those services.” But they also add: “On the other hand, state and local governments have no obligation under the ADA to provide services in segregated settings.”

This is an odd statement: With the exception of those states that still operate public Intermediate Care Facilities (ICFs)—residential facilities for severely intellectually and developmentally disabled people who require intensive, round-the-clock care—states typically don’t act in the role of service providers. Rather, state disability offices are charged with managing Medicaid waivers, jointly funded by the state and the federal government—from designing those waivers (which often come in different sizes to reflect different levels of support), selectively distributing them, and setting parameters about how they may be used.

It's this last responsibility that I suspect the DOJ is referring to. Despite the fact that the entire disability service sector is purportedly based on individual needs and preferences (the foundational document is the Individualized Service Plan (ISP)); it is incontrovertible that some intellectually disabled adults and their families have been fighting to preserve 14(c) programs and other disability-specific settings; and that these settings, as acknowledged in the new guidance, do not violate the ADA. Despite this, the DOJ appears to be urging states to deprioritize and potentially eliminate these options.

Continued

A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2023

By Alice Burns, Maiss Mohamed, and Molly O’Malley Watts, KFF, November 29, 2023

Home- and community-based services (HCBS) waivers allow states to offer a wide range of benefits and to choose—and limit—the number of people who receive services. The only HCBS that states are required to cover is home health, but states may choose to cover personal care and other services such as private duty nursing through the Medicaid state plan. Those benefits are generally available to all Medicaid enrollees who need them. States may use HCBS waivers to offer expanded personal care benefits or to provide additional services such as adult day care, supported employment, and non-medical transportation. Because waivers may only be offered to specific populations, states often provide specialized benefits through waivers that are specific to the population covered, such as providing supported employment only to people under age 65. KFF estimates that over 4 million Medicaid enrollees use HCBS, and that the numbers of people using HCBS through the state plan are similar to the numbers using HCBS through waivers.

States’ ability to cap the number of people enrolled in HCBS waivers can result in waiting lists when the number of people seeking services exceeds the number of waiver slots available. Waiting lists reflect the populations a state chooses to serve, the services it decides to provide, the resources it commits, and the availability of workers to provide services. In addition, states’ waiting list management approaches differ with regard to prioritization and eligibility screening processes, making comparisons across states difficult. States are only able to use waiting lists for optional services so the number of people on waiting lists can increase when states offer a new waiver or make new services available within existing waivers; in these cases, the number of people receiving services increases, but so does the number of people on a waiting list. In many cases, people may need additional services, but the state doesn’t offer them to anyone or only offers them to people with certain types of disabilities. Waiting lists would not capture the unmet needs of those people. Finally, although people may wait a long time to receive waiver services—36 months on average—most people are eligible for other types of HCBS while they wait.

Even though HCBS waiting lists are an imperfect measure of unmet need, there are no alternative measures available. Many HCBS programs were enacted or expanded in response to the Olmstead decision, a court ruling that found the unjustified institutionalization of people with disabilities is illegal discrimination. As the 25^th anniversary of Olmstead nears, waiting lists are sometimes described as contributing to the risk of unnecessary institutionalization for people with disabilities, and policy makers across political parties have proposals to address them. A recent proposed rule would require states to report the number of people are on waiting lists but is not clear how that requirement would be defined.

This data note provides new information about waiting lists from KFF’s most recent survey of state Medicaid HCBS programs, including a discussion of why waiting lists are an incomplete measure of unmet need and why they are not necessarily comparable across states or over time. In the 2023 survey, KFF asked states to report the number of people who were on “interest” lists for HCBS, as well as waiting lists, a difference from prior years. Key takeaways include:

• The number of states that maintain waiting lists or interest lists for people who would like to receive HCBS has fluctuated little between 2016 and 2023.
• In most years since 2016, there have been close to 0.7 million people on waiting lists or interest lists, with a total of over 692,000 in 2023.
• Most people on waiting lists or interest lists have intellectual or developmental disabilities and most live in states that do not screen any people for eligibility prior to adding them to waiting lists.
• Most people on waiting lists or interest lists are eligible for personal care provided through states’ regular Medicaid programs or for services provided through specialized state plan HCBS benefits.

KFF also recently updated the waiting list indicators on State Health Facts to help people better understand who is on waiting lists and what those waiting lists mean.

Continued

Click here to find out about waiting lists in your state

Opinion: While Thankful For Assistance, Navigating Waivered Services Has Not Been Easy

By Mike and Rebecca Klehm, The Oklahoman, November 26, 2023

Our daughter, Addison, who was born with Down syndrome in March 2004, was placed on the Developmental Disabilities Services (DDS) waitlist for waivered services in 2006. 

Waivered services are designed to provide support to help families keep their loved ones with an intellectual disability in their home. We use the self-directed waivered services to hire a Habilitation Training Specialist (HTS) to work with Addison on daily living skills, healthy lifestyle, communication, and community/social activities. DDS has partnered with Acumen Fiscal Agent, which helps administer the program funds.   

While we are thankful for waivered services, the administration of the funds is a classic example of unnecessary government red tape, siloed processes and no accountability. The DDS and Acumen representatives are well-meaning, but the systems in place by both DDS and Acumen are wasting valuable taxpayer resources in inefficient administration.   

In my family's experience, there are three problems with the administration of waivered services: no accountability for DDS and Acumen, Acumen gets paid no matter how well or poorly they do their jobs, and poorly designed systems. 

First, both DDS and Acumen frequently made mistakes that required an inordinate amount of effort to force them to correct their own mistakes. For example, we wanted to provide our HTS with a raise after she had been employed for one year. Even though we followed the instructions precisely, both DDS and Acumen made numerous mistakes that caused this process to extend over many months and required us to send numerous emails and phone calls to DDS and Acumen, expending over 30 hours of our own personal time to remedy their mistake.     

Second, Acumen is paid by taking a percentage of the budgeted funds for the individual, so the individual is not receiving the full intended benefits of the funds. Further, there is no recourse when Acumen does not fulfill its services, and they get paid no matter how they perform their duties. For example, it often takes days/weeks to get a response from Acumen. Further, the fiscal agent frequently makes mistakes in its own administration, which cause us to spend countless hours in emails and phone calls to get them to remedy mistakes they created. Regardless of how poorly they perform, they still get a portion of the recipient’s budget.   

And finally, from our experience, there was no integration between the systems used by DDS and Acumen, so everything was either postal mailed or emailed with no automation. As a result, delays were frequent, miscommunication was rampant and mistakes were frequently made as people were constantly re-keying the same information from the emails into ancillary systems. 

As a parent, managing waivered services is very time-consuming and challenging. You are the middle person between DDS and Acumen, so you spend numerous hours each month either fixing problems that DDS and Acumen created or forcing DDS and Acumen to communicate with each other. This leaves us wondering how we will ever pass this task on to Addison’s caregiver once we are at an age we can no longer care for her. 

Read the full article here

Florida: State Leaves $800 Million On The Table For Disability Services, Advocates Say

By Jeffrey Schweers, Orlando Sentinel via Disability Scoop, December 1, 2023

Florida officials responsible for providing services to people with lifelong disabilities have allowed nearly $800 million in state and federal matching funds to fall through the cracks in the past two years, according to a budget analysis by a statewide advocacy group.

That’s enough to give the 23,000 people on a waiting list maintained by the Agency for Persons with Disabilities the critical services they need to live with their disorders, which include autism and cerebral palsy, the advocates say. The money could be used for medical treatment, therapy, housing and to help people maintain a level of independence and stay out of institutions.

The 34,000 people who do receive those services — a number that hasn’t changed much in two decades — face cuts each year to the services that help them live fuller lives.

“They always blame it on a lack of funding, then fire the director,” said Ven Sequenzia, who served as president of the Autism Society of Florida for 18 years and has a 40-year-old adult daughter with autism, epilepsy and cerebral palsy. “It’s frustrating. It’s the same crap every year.”

Discovering that the money has been in the state’s budget all along outraged him.

“When I saw the numbers and they said they don’t have money to fund the list, I lost it,” said Sequenzia, who lives in Sanford. “Sorry if I’m not being politically correct, but this is criminal. In two years they blew this. If they used all the money available to them, the waiting list would be gone.”

Continued

Congress Urged To Update SSI Asset Limits

By Michelle Diament, Disability Scoop, November 27, 2023

An independent federal agency says that the government’s failure to update asset limits associated with Supplemental Security Income and other programs is leaving people with disabilities in a tough spot.

For decades, asset limits for government benefit programs have gone unchanged even as the cost of living has risen. As a result, individuals with disabilities are often hampered in their efforts to become more independent, according to a new report from the National Council on Disability, which is charged with advising the president and Congress on disability issues.

“As asset and income limits haven’t been scaled to inflation or revised even a penny in 34 years, it means people with disabilities have been forced, by federal policy, to be poorer and poorer, year over year, to qualify for critical supports and services,” said Theo Braddy, a member of the council. “Federal disability policies should be about helping people live independently, get to work and get out of poverty. The current asset and income limits ensure the opposite.”

Chiefly, asset limits come into play for those receiving SSI who are allowed to have no more than $2,000 in resources at any given time. Often, maintaining SSI eligibility is key to accessing Medicaid. In addition, the report notes that getting married can alter an individual’s access to needed benefits.

Read the full article here

Announcement from the ACL

Center for Transition to Adult Health Care for Youth with Disabilities Launches New Website

The Center for Transition to Adult Health Care for Youth with Disabilities, a national resource center funded by ACL’s Administration on Disabilities (AoD), has launched a new website to help young people with intellectual and developmental disabilities (I/DD) direct their own transition to the adult health care system.

Developed for and by youth with I/DD, the site has a variety of both person-centered and culturally competent tools and resources to help support youth, their families, and health care professionals through this important transition.

Resources on the website are designed to give youth more choice and control throughout their health care transition. Examples include helping youth gain an understanding of their legal rights and responsibilities in a health care setting and supporting them to lead appointments and at-home health care routines. The website’s data section shows that only 14% of youth with I/DD receive health care transition preparation and guidance from their doctor.

Read about the program here

Despite Bans, Disabled Women Are Still Being Sterilized in Europe

By Sarah Hurtes, The New York Times, November 25, 2023

Anita cannot speak or comprehend complex information. At 28, she communicates mostly with facial expressions and baby-like sounds. When excited, she washes her hands. When her periods cause cramping and pain, she moans and agitates, unable to understand.

To eliminate this monthly discomfort and ease the burden of caring for her, caregivers at an assisted-living home in Reykjavik, Iceland, proposed an unusually aggressive step. The home’s manager recommended that Anita undergo a hysterectomy, a major surgical procedure to remove her uterus and end her periods.

Eirikur Smith, an official in Iceland’s disabilities office, discovered this plan last year during a routine visit to the home.

“Does she even know if she wants children later?” he recalls asking.

The manager, he said, was stunned. “She just laughed in my face.”

“‘Of course not,’” he said she replied. “‘Why would she ever want children?’”

Forced sterilization, with its history of racism and eugenics, is banned under multiple international treaties. Thirty-seven European nations and the European Union have ratified the Istanbul Convention, which declares, without exception, that nonconsensual sterilization is a human rights violation.

But a New York Times investigation found over a third of those countries have made exceptions, often for people that the government deems too disabled to consent. Some countries have banned the practice but not actually criminalized it. And records show that the Istanbul treaty’s official watchdog has repeatedly criticized governments for not doing enough to protect disabled people. (The United States has signed but not ratified a separate treaty on the issue and sterilization laws vary by state.)

The result is that people with intellectual disabilities — mostly women — are still being sterilized, even when it is not medically necessary.

Continued

[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.

S.1193 / H.R.2708 - The Latonya Reeves Freedom Act of 2023

Sen. Michael Bennett (D-CO) / Rep. Steve Cohen (D-TN) Allegedly written and strongly supported by ADAPt and other self-advocacy groups, this is a watered-down version of the Disability Integration Act. It is strongly biased against care in larger congregate facilities, and falls just short of seeking the elimination of ICFs.

VOR HAS SIGNIFICANT CONCERNS WITH:

S.100 / H.R.547- Better Care Better Jobs Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) This bill establishes programs and provides funds for state Medicaid programs to improve home- and community-based services (HCBS), such as home health care, personal care, case management, and rehabilitative services.

The bill also makes permanent (1) the Money Follows the Person Rebalancing Demonstration Program (a grant program to help states increase the use of HCBS for long-term care and decrease the use of institutional care), and (2) certain provisions regarding Medicaid eligibility that protect against spousal impoverishment for recipients of HCBS.

S.762 / H.R.1493 - The HCBS Access Act

Sen. Bob Casey (D-PA) Rep. Debbie Dingell (D MI) While this bill purports to eliminate waiting lists and provide more Home and Community-Based Services for people with I/DD and autism, it favors the aspirations of those individuals who are most independent and neglects the very real needs of those most dependent on Medicaid Long-Term Services and Supports. It would not distribute funds appropriate to the varying needs of individuals, but to providers of HCBS programs. It fails to recognize the severity of the DSP and Nursing Crises, and paints an unrealistic picture of a simplistic solution. This is a purely political bill that would ultimately fail to make the extensive changes that the DD/A system needs.

S.3118 - The HCBS Relief Act of 2023

Sen. Boby Casey (D-PA) A bill to provide for an emergency increase in Federal funding to State Medicaid programs for expenditures on home and community-based service. This bill, like others above, only provides funding for people receiving Long-Term Services and Supports through HCBS, denying any support for people in nursing homes or ICFs.

VOR supports increasing funding for people with I/DD, but we have concerns that the above bills, in their current form, would discriminate against people with the most severe I/DD and autism and jeopardize the higher-care facilities that are most appropriate to their needs.



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