September 1, 2023

VOR's Weekly News Update

Happy Labor Day!

Don't forget to thank your Direct Support Professionals for their dedication and devotion to our loved ones with I/DD and Autism

Image courtesy of the U.S. Department of Labor. For more information, please visit:



https://www.dol.gov/agencies/odep/program-areas/individuals/DSP

Why ICFs Matter

Join us for our next Quarterly Networking Meeting, when we present a forum on the importance of Intermediate Care Facilities to a full continuum of care for people with intellectual and developmental disabilities and autism.

September 21, 2023

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

On Zoom

Our panel will be moderated by Roslyn Leahey, and will feature VOR Board Members Rita Winkeler (Murray Center, Illinois), Sybil Finken (Glewood Resource Center, Iowa), Terry Lafleur (Pinecrest Center, Louisiana) and Joanne St. Amand (Greenbrook Developmental Center, New Jersey),

We look forward to hearing from you about the importance of ICF care for your loved one with I/DD or severe autism.

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To join the meeting, click on the Zoom link below

https://us02web.zoom.us/j/88425442450?pwd=TEVxL0kvZ0xMcDlFVkkydCtDYzNmQT09

Meeting ID: 884 2544 2450

Passcode: 122333

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Find your local number: https://us02web.zoom.us/u/kymJYqj3i

Administration for Community Living:

Webinar on the Implications of the Medicaid Renewal Process for People with Disabilities and Older Adults

Wednesday, September 6, 2023 | 11:30 AM-1:00 PM ET

ACL invites you to join us for a webinar on the implications of the Medicaid renewal process for older adults and people with disabilities.

During the webinar, aging and disability network organizations will discuss the issues that they’ve seen as Medicaid renewals restart following the end of the COVID-19 public health emergency with representatives from the Centers for Medicare & Medicaid Services (CMS). The discussion will center around topics including eligibility, enrollment, and the continuation of critical services — including home and community-based services — for people with disabilities and older adults.

ASL interpretation and CART will be provided. A video recording and transcript of the webinar will be posted on ACL’s Medicaid Renewals and Other Policy Changes due to the end of COVID-19 Flexibilities page. Contact [email protected] with any questions or additional accessibility requests.

Registration is not required. The passcode for the webinar is ACLWeb@1.

Social Security Proposes Update To SSI Calculation

By Michelle Diament, Disability Scoop, August 29, 2023

The Social Security Administration uses a different standard to determine Supplemental Security Income benefits for people living in certain states. Now, the agency wants to update its rules to treat beneficiaries nationwide more equitably.

The agency is proposing a new rule to modify how it alters benefit payments for those who receive what’s known as “in-kind support and maintenance” in the form of a rental subsidy.

Under current rules, SSI benefits are reduced if a person is paying rent or shelter expenses that are lower than the current market value, or what they would pay on the open market. This is significant in cases where a person with a disability is renting from a family member, for example, who charges them a reduced rate.

But, due to court rulings, the agency uses a less stringent standard in seven states — Connecticut, New York, Vermont, Illinois, Indiana, Wisconsin and Texas. In these states, benefits are not reduced if a person is spending more than a third of their income on housing even if their rent is less than the current market value.

The proposed rule published this month in the Federal Register seeks to expand the more lenient standard already in place in seven states to the entire country.

The Social Security Administration estimates that about 41,000 current SSI beneficiaries would see their monthly payments rise under the rule change by an average of $128 per month. And, some 14,000 individuals who don’t receive SSI now would be able to qualify for the program as a result of the update.

More than 7 million Americans receive SSI each month, with a maximum federal benefit of $914 for individuals and $1,371 for couples.

The proposed rule is up for public comment through Oct. 23.

Read the full article here

Some are waiting months -- even years -- for their child, who might be displaying aggressive behaviors, to be placed in a residential therapeutic home.

"We've had a couple TVs that have been destroyed. Glass shattered. Fans destroyed. Christmas decorations decimated, all kinds of behaviors," said Jodi Coyne, who's been waiting nearly a year for placement for her son who was diagnosed with autism at age four. 

She describes her now-teen as funny and sweet, athletic, and with the capacity to be loving -- but who struggles to regulate himself. Often, his outbursts bubble up, without warning. 

She and her husband have found ways of coping -- but being in crisis long-term brings the mother of two to the verge of tears. Dozens of holes in their walls are covered with construction paper; the family now waiting to fix them permanently.

"We try our best to catch it before it gets escalated, so we do have some skills we can apply: helping him breathe, talking him through it," said Coyne. "[But] when the testosterone hits the autism, it can be very hard to manage."

Indeed, Colorado's Behavioral Health system is in crisis: 14 children dealing with complex behavioral issues have been sent out of state because Colorado doesn't have the resources to house and treat them. The state couldn't provide the number of those with intellectual and developmental delays who have been sent out of state, that are recorded in their database. 

Twenty-five additional children are currently waiting to be placed in residential facilities; four of those have intellectual and developmental delays.

The Department of Human Services oversees residential placement for children -- 3,662 in 2022 -- which encompasses those in the foster care system, those in mental health crises, those who've stepped down from Division of Youth Services facilities to include sex or gun offenses, and those diagnosed with intellectual and developmental delays.

The needs are complex and there is no one-size-fits-all treatment plan.

In its own assessment, CDHS writes,

"The population of children and youth served in residential facilities has shifted dramatically, resulting in a smaller population but one that requires more intensive staffing, treatment, and care coordination."

Continued

Indiana - ABA Providers Struggle to Care for Medicaid Patients Amid Rate Stagnation, Cuts

By Chris Larson, Behavioral Health Business, August 28, 2023

Indiana’s state government plans to impose steep cuts to Medicaid rates for some autism therapy services. The move is out of step with present rate trends but may be a harbinger for other cuts as payers nationwide seek to bring growing autism therapy spending to heel.

In Indiana alone, Medicaid spending on autism therapy services has increased by an average of more than 50% each year from 2019 to 2022. 

If made effective, autism therapy providers may need to partially or altogether stop treating patients with Medicaid, potentially restricting an already hard-to-get service for an especially vulnerable population.  

While autism therapy insiders say the move stands out as somewhat of an anomaly among other state Medicaid programs, the sharp rise in inflation over the last five years effectively transformed stagnant rates into rate cuts.

“Generally, we’re not seeing states decrease rates,” Mariel Fernandez, a board-certified behavioral analyst (BCBA) and the regulatory affairs specialist for BlueSprig Pediatrics, told Behavioral Health Business. “We’re seeing rates remain the same, increase, or an analysis occur to determine if there is a need to propose new rates.”

Many providers have struggled with rate stagnation amid the increase in inflation. This has caused several of the nation’s largest autism therapy providers to cut center locations and pivot their businesses.  

Sheridan pointed to Oregon and Colorado as examples of where this has happened.

Last year, the Henderson, Nevada-based Center for Autism and Related Disorders (CARD) started closing its operations in Oregon and nine other states. A little more than six months later, the company filed for bankruptcy after failing to find an out-of-court deal to shore up the company’s finances. The bankruptcy court approved a deal that sells most of CARD’s locations back to its founder.

In Colorado, two large autism therapy providers — Indianapolis-based Hopebridge and Doylestown, Pennsylvania-based Invo Healthcare — shuttered locations, citing major disruptions to their business that stemmed from the coronavirus pandemic. The pandemic interrupted the business operations of thousands of businesses and helped set off the run of inflation facing the U.S. now. 

Invo Healthcare decided to shutter its in-home and center-based operations, paring the company down to just school-based ABA and other behavioral health services.

Hopebridge announced it would close six out of its eight locations and end ABA services altogether. At that time, Hopebridge CEO David McIntosh cited Medicaid rates as a motivator for the move. It faces a worse situation — a dramatic rate cut — in Indiana.

The cuts could run especially deep for Hopebridge. The company was founded, is headquartered, and operates the largest share of its centers in Indiana. Of its 122 locations, 21 are in Indiana.

“As the largest ABA provider in Indiana, one of the largest in the country, and with our headquarters and founding location in the state, we have made our concerns known to [the state of Indiana],” McIntosh told BHB. “As the state continues to assess the feedback provided — not only from Hopebridge but all the providers in the state — we hope they will settle on a fair rate that is sustainable to meet the high demand for services. 

Read the full article here

Democratic U.S. Senators Martin Heinrich and Ben Ray Luján and U.S. Reps. Teresa Leger Fernández, Melanie Stansbury, and Gabe Vasquez announced the receipt of $1.05 million in funding from the federal Health Resources and Services Administration (HRSA) for extended screenings and follow-up services at two community health centers catering to children aged 0-5 and to expand the nurse workforce in medical practices throughout the state, an Aug. 28 press release from Heinrich's office said.

"Every person deserves access to quality, affordable health care in their community,” Heinrich said in the release. “This funding will be instrumental in giving local community health centers the tools they need to keep our kids healthy while investing in New Mexico’s nursing workforce to better meet the health care needs of all New Mexicans.”

The funding for improving developmental outcomes in children aged 0-5, focusing on elevated screenings and follow-up services, totals $400,000, with half of that going to Ben Archer Health Center in Hatch and the other half to Presbyterian Medical Services in Santa Fe. The University of New Mexico Health Sciences has been awarded $650,000 through HRSA's Advanced Nursing Education Workforce, the release said.

Continued

Ohio - Wage Increase on the Horizon for DSPs

Sidney Dailey News, August 30, 2023

After months of working behind the scenes and advocating for the need for higher wages for Direct Support Professionals, Ohio has included an historic rate increase to assist with raising the average wage for that role in the 2024 state budget.

In case you’re not aware, Direct Support Professionals (DSPs) are people who work with individuals with disabilities, providing support in homes, in the community and even in the workplace. The majority of DSPs in Ohio’s developmentally disabilities service system are paid through Medicaid waivers. They may work as independent providers or work for one our agency partners. Not only does Shelby County Board of DD write the service plan, but we also pay for part of the cost of each of the waiver services.

Beginning Jan. 1, 2024, the average wage for DSPs across the state is required to be $18 per hour. That average wage will go up again in July 2024 to $19 per hour with the additional amount provided by local county boards of DD.

We believe that this historic increase in rates is a significant step in the right direction. We have all experienced the consequences of a labor shortage, but for the people we serve these consequences often mean so much more. It could mean that they have to go into a nursing home because there is no one to care for them at their apartment. It could mean that they might not have the support they need to attend the day program of their choice or keep their community job. Without quality DSPs, our support system just does not work.

Continued

Without A Voice:

Abuse and Neglect in California Disability Group Homes 

A three part series on Abuse and Neglect in California's Group Home System, from KALW Public Media

As we circle back toward the entrance, we make our way to a room that’s been sectioned off with heavy black curtains. As we push through the fabric and enter a dining room, I feel like I’m stepping into another world.

“I've got thousands of documents,” Elaine says. “This is the war room.”

It looks like a prosecutor’s office the night before a trial, with reams of papers piled high on the table, and stacks of crates stuffed with documents.

The name “Katrina” is printed on many of the documents scattered around the room. Katrina, 43, is Pat’s adult daughter, and Elaine’s stepdaughter. She’s been diagnosed with autism, epilepsy, along other conditions, and is currently living in a group home for adults with developmental disabilities. She’s also nonverbal — she doesn’t speak at all, though she does make sounds. The couple says that Katrina is stuck in a system that has allowed her to be abused and neglected over and over again. They’ve been gathering all this paperwork to try and hold that system accountable.

Elaine is in her early 60s. She’s high energy, enthusiastic, with a penchant for cheetah print. Pat is in his mid 70s. The two are engaged. They started dating in 2016, after each going through a divorce. And as they got closer, Elaine began taking on a bigger role in looking after Katrina. “It just seemed natural to me,” she says. “That's what you do. It goes with the territory.”

Elaine’s motivation for getting so involved is also deeply personal. “My brother passed away,” she tells me. “By suicide, I think it was in 2014. He had had a head injury when he was 18. You know, he was disabled permanently.”

She’d seen how difficult it had been for him to navigate the system. To get the help he needed. “I think a big part of the reason that he committed suicide right before he turned 50 was just, he was just over it,” Elaine says.

Pat says that, since she was a little girl, Katrina has been a handful. “She was destructive, into everything and would just tear up your house.”

Katrina has this really sweet side, but the reality is she can be extremely difficult to work with. Pat tells me meltdowns and tantrums were par for the course. She can physically hurt other people or herself. Sometimes she smears her feces. As a kid she needed 1 on 1 supervision all the time, sometimes 2 on 1. That’s actually still the case. It was more than Pat and his ex-wife could provide at the time, so Katrina went to live at a group home.

But, the system is really tough for people like Katrina. She bounced from one home to another over the years. At one point she spent over 6 months in a hospital room because the state wasn’t able to find a suitable placement for her.

Pat and Elaine were determined to get her somewhere safe.

In early 2021, a solution seemed to emerge. The couple was told that a spot had opened up nearby in this new kind of home. An Enhanced Behavioral Support Home, Or EBSH. These homes were designed specifically for people with the most challenging behaviors and intense needs, like Katrina.

"We were hopeful because an EBSH home is overseen by the state,” Elaine says. “So we were hopeful that this would mean that there'd be a little bit more, you know, hands on and that there wouldn't be such an opportunity for neglect or abuse.”

EBSHs have only been around for about 6 years. They’re part of a plan to transition away from big state-run institutions and toward smaller community-based homes. These homes house a maximum of four people at a time. They’re only a fraction of the over 6,000 total group homes for California residents with developmental disabilities. As of April 2023, there were about 65 licensed EBSHs scattered throughout the state, with more in development.

On paper, it sounded perfect to Katrina’s parents. EBSHs are supposed to have plenty of resources, highly trained staff, and extra scrutiny from regulators.

“She moves to the home and we thought everything was gonna be okay,” Elaine says. “But it's not. It's horrible.”

There’s mounting concern among advocates that these high-intensity group homes like EBSHs, and another similar type of home called Community Crisis Homes, are becoming breeding grounds for abuse, neglect, forced restraint, and other forms of mistreatment.

Judy Mark is the Co-Founder and President of Disability Voices United, a California-based advocacy nonprofit.

“It is those people who are non speaking or minimally speaking, who are at the highest risk in these congregate settings,” she says. “And are often pushed to the side and ignored.”

Read the full article here

Former Disability Group Home Admin Accuses Parent Company of Abuse, Mismanagement 

By Christopher Egusa, KALW Public Media, August 29, 2023

It’s January, 2023. I’m meeting a woman named Ileya Silva. We meet up at a library in Vacaville, about halfway between my home in the San Francisco Bay Area and hers in Sacramento. Ileya has dark hair and a serious demeanor. She’s understandably wary about talking with me because what she’s about to share could jeopardize her job and her entire career.

She tells me that even though she’d worked in group homes for 20 years, she still wasn’t prepared for what she experienced at the Illinois Home.

“What I found,” Ileya says, “was, I mean, just nothing like I had ever seen at any home that I have ever worked at, any program I've ever worked at.”

Seven months prior, in March, 2022, Ileya had started a new job as an administrator at a group home in Sacramento. The job had been promising. It was with a company called Sevita Health, a large national operator of group homes and care facilities throughout the country. At the time, the company already operated over twenty five facilities in California, and had recently obtained contracts to operate several new ones.

Ileya works with people who have severe intellectual and developmental disabilities — conditions like autism, cerebral palsy, and Down Syndrome. She’d built a reputation in her field as someone who excelled at working with the most challenging clients — first as a caregiver, then as administrator. She’d found that she just had the right temperament.

“I didn't take their behaviors personally,” Ileya says, “which is a vital skill in this field. I found my niche and I said this is where I want to be, and where I want to develop my career.”

In early 2022, before Ileya came on board, Sevita Health had a problem. Things weren’t going well with the new homes. One home in particular — called “The Illinois Home” because it sits on Illinois avenue — had gotten in trouble with some of the local oversight agencies. “Regional Center had put them on notice,” says Ileya. “And let them know they needed an administrator now.”

Ileya seemed like the perfect fit. She says the hiring process was a blur. She says that even though she didn’t know exactly what had gone wrong at The Illinois Home, she felt confident that she’d be up to the task.

Ileya says that what followed was a harrowing eight months, which left her mentally and physically burnt out, and suspended from her job. She says the role required her to compromise her ethics and claims that she was targeted by management for speaking out.

Continued

The following is an excerpt from an interview on KALW radia, between the announcer Hana Baba (sp?) and reporter Chris Egusa:

HANA: So, Chris, there’s a bill that is making its way through the state legislature right now, and it’s actually connected to some of the issues you uncovered in your reporting. The bill is called AB 1147, or the Disability Equity and Accountability Act. That word “accountability” to me is just so important after hearing about this investigation. What can you tell us about the bill?

CHRIS: Yeah, so AB 1147 was introduced back in February by state assembly member Dawn Addis. And the proponents of this bill say it will address some of the really serious shortcomings of California’s developmental disability system.

My reporting was really focused around this one home and this one area – that being Sacramento. But, the state agency that is responsible for the whole system – that’s the Department of Developmental Services – they’ve been under fire from kind of all different directions recently.

HANA: Ok, and before we get into those issues, how big is the developmental disability system? What scale are we talking about here?

CHRIS: Great question. So right now in 2023, it serves about 400,000 people with developmental disabilities — and those are conditions that start in childhood and affect people for their whole lives. Some examples of a developmental disability would be autism, cerebral palsy, or Down Syndrome. And the Department of Developmental Services, or DDS for short – it has a budget of about $14 billion this year.

HANA: That’s a huge budget. And you mentioned DDS has been under fire from all different directions recently. What are the criticisms of this system?

CHRIS: Well, the first kind of salvo was this pretty scathing report from the State Auditor’s Office, back in June 2022. And to understand it, I need to explain a little about how the system works. So under DDS is this network of 21 nonprofits called regional centers. They’re spread throughout California, and they’re kind of the hubs through which all the funding and services flow through. And so if you’re someone with a developmental disability, or a parent of a child with one, you go to your local regional center, and you get a case manager, and they’re supposed to coordinate all of your services, which the state ultimately pays for.

HANA: Ok so what kinds of services?

CHRIS: It could be something like speech therapy, or behavioral therapy, all the way to specialized residential homes like the one Katrina lives in.

And, so among other things, the State Auditor said that regional centers, along with DDS, are failing to monitor their vendors at an adequate level. Vendors being all those service providers.

HANA: So these are things like check ins, inspections, things like that?

CHRIS: Exactly. The state auditor looked at 3 different regional centers. And none of them could show that they were consistently performing these quality assurance inspections at the level state law requires.

HANA: None! That’s shocking!

CHRIS: It is. The state auditor also found that people and families weren’t being informed about their rights to file complaints, or even the process for how to file a complaint.

HANA: Ok, so DDS has been taking heat. This state audit is kind of one source of heat — where else has that heat been coming from? Who else is pressuring them?

CHRIS: The pressure on DDS really got ratcheted up last October because this independent oversight agency called the Little Hoover Commission launched a months long series of hearings to look at how DDS is failing in all these different aspects of its role.

And they also found some pretty glaring systemic failures.

Read or listen to the full interview here

Information about CA AB1147 can be found here

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

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

VOR SUPPORTS:

S.1332 / H.R.2941 - Recognizing the Role of Direct Support Professionals Act

Sen Maggie Hassan (D-NH) / Rep. Brian Fitzpatrick (R-PA) This bill requires the Office of Management and Budget to establish a separate category within the Standard Occupational Classification system for direct support professionals (i.e., individuals who provide services to promote independence in individuals with an intellectual or developmental disability) for data reporting purposes.

H.R. 553 - Workplace Choice and Flexibility for Individuals with Disabilities Act

Rep. Glenn Grothman (R-WI-6) - This bill would amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.

H.R.1296 - Restoration of Employment Choice for Adults with Disabilities Act Rep. Glenn Grothman (R-WI-6) - To amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.485 - Protecting Health Care for All Patients Act of 2023

Rep. Cathy McMorris Rodgers (R-WA-5) - This bill prohibits all federal health care programs, including the Federal Employees Health Benefits Program, and federally funded state health care programs (e.g., Medicaid) from using prices that are based on quality-adjusted life years (i.e., measures that discount the value of a life based on disability) to determine relevant thresholds for coverage, reimbursements, or incentive programs.

H.R.670 - Think Differently Database Act

Rep. Marcus Molinaro (R-NY-19) - This bill would amend title IV of the Public Health Service Act to direct the Secretary of Health and Human Services to establish a clearinghouse on intellectual disabilities, and for other purposes. Such clearinghouse shall include information on individual community-based services and long-term support services available to individuals eligible for medical assistance under a State plan under the Medicaid program under title XIX of the Social Security Act.

S.1298 - Supporting Our Direct Care Workforce and Family Caregivers Act

Sen. Time Kaine (D-VA) A bill to award grants for the creation, recruitment, training and education, retention, and advancement of the direct care workforce and to award grants to support family caregivers.

H.R.2965 / S.1333 - Autism Family Caregivers Act of 2023

Rep. Grace Meng (D-NY) / Sen. Robert Menendez (D_NJ) To award grants for providing evidence-based caregiver skills training to family caregivers of children with autism spectrum disorder or other developmental disabilities 

H.R.3380 - HEADs UP Act of 2023

Rep. Seth Moulton (D-MA) This bill authorizes the Department of Health and Human Services (HHS) to award grants to support health centers that provide services for individuals with developmental disabilities, including dental care. Grant recipients must provide specialized treatment to individuals with developmental disabilities as necessary.

VOR OPPOSES:

S.533 / H.R.1263 Transformation to Competitive Employment Act

Sen. Bob Casey (D-PA) / Rep. Bobby Scott (D-VA 3) - This bill would support employers who wish to transform their facilities to provide only competitive integrated employment while forcing the elimination of programs that offer employment opportunities under Section 14(c) of the Fair Labor Standards Act. This bill would be unlikely to create a significant increase in employment for people with I/DD and autism, but would deprive over 120,000 individuals of the opportunity to work, develop skills, and be part of their community.

S. 1148 - The Guardianship Bill of Rights

Sen. Bob Casey (D-PA) - A bill to establish rights for people being considered for and in protective arrangements, including guardianships and conservatorships, or other arrangements, to provide decision supports. This bill would give ACL power to create a Guardianship Council and appropriate more money to P&As so they may encourage people to leave guardianships and move to Supported Decision Making. Dangerous over-reach in response to media hype on Britney Spears, et al.

VOR HAS SIGNIFICANT CONCERNS WITH:

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

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

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

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

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

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



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