by Michelle Diament | June 28, 2021 Disability Scoop

For the first time in years, a federal panel tasked with guiding the nation’s priorities on autism is set to meet.

The Interagency Autism Coordinating Committee will hold a virtual meeting July 21 and 22. The panel is comprised of government officials and members of the autism community and is charged with advising the secretary of health and human services and coordinating federal activities related to the developmental disability. The group last met in July 2019.

Since that time, all of the committee’s members saw their terms expire. Congress approved the continuation of the committee as part of the Autism CARES Act, which took effect in October 2019, and nominations for new members were accepted between Nov. 19, 2019 and Feb. 21, 2020, but no new appointments were made.

Susan Daniels, director of the National Institute of Mental Health’s Office of Autism Research Coordination, which manages the IACC, told Disability Scoop that the COVID-19 pandemic played a role in the delays and things were further held up when the White House changed hands in January.
Now, officials say that new committee members will be announced in the coming weeks.

Alison Singer, who is president of the Autism Science Foundation served three terms on the IACC off and on between 2007 and 2019, said that she’s “thrilled” to see the committee resuming.

“The IACC plays a critical role in the autism community and its dormancy for over a year has had real repercussions,” Singer said. “Individuals with autism and their families have been disproportionately affected by the pandemic in terms of lost school time, canceled services, social isolation and shuttered university research centers. It’s more urgent than ever for the IACC to resume its function coordinating federal and public efforts to support autism research and services, and to inform the HHS secretary about the effect of COVID-19 on our population so that appropriate new policies can be enacted.”​

The new iteration of the IACC will be larger than before. Under the most recent version of the Autism CARES Act, the number of self advocates, parents and autism group representatives on the panel will grow from two to three each. The law also calls for the IACC to add members from the U.S. Departments of Labor, Justice, Veterans Affairs and Housing and Urban Development.

President Joe Biden’s effort to get people with disabilities off waiting lists by infusing billions into Medicaid home and community-based services looks stalled for the moment, but the plan may soon get new life.

The proposal to inject $400 billion into the community-based services system came as part of Biden’s American Jobs Plan, a wide-ranging infrastructure proposal introduced in March.

At the time, the White House said “these investments will help hundreds of thousands of Americans finally obtain the long-term services and support they need, while creating new jobs and offering caregiving workers a long-overdue raise, stronger benefits, and an opportunity to organize or join a union and collectively bargain.”

But right from the start, Republicans opposed the home and community-based services plan arguing that it had no place in an infrastructure bill. And, the proposal is missing from a bipartisan infrastructure deal that Biden endorsed this week.

“It is frustrating that an issue that is nonpartisan — because constituents need HCBS in every district, in every state — is getting left out due to semantics,” said Nicole Jorwic, senior director of public policy for The Arc, who noted that the community-based services component continues to poll better than any other part of the American Jobs Plan.
​
Despite the setback, however, Jorwic and other advocates say they expect that the extra funds for home and community-based services will be included in a budget reconciliation bill that could be passed in the coming months by Democrats alone.

Just this week, Democrats in Congress unveiled legislation to make Biden’s plan a reality. Known as the “Better Care Better Jobs Act,” the bill would offer states a 10 percentage point increase in the matching funds they receive from the federal government for home and community-based services if they meet certain requirements. In addition, it includes incentives for states to strengthen the direct care workforce.

The measure, backers point out, is already co-sponsored by 40 of the nation’s 100 senators.

The legislation cannot come soon enough, said Sarah Meek, senior director of legislative affairs at the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation. She said that workforce shortages before the pandemic meant that providers were often unable to open new lines of service, but those issues have been exacerbated and now some agencies don’t have the staff to continue serving existing clients with disabilities.​

“We’re at a breaking point and something like this has to happen,” Meek said.

​by Shaun Heasley | May 24, 2021  Disability Scoop

​Apple is set to roll out a host of updates to make its devices even more user-friendly for people with disabilities.

The technology giant said that software updates coming later this year will include changes “designed for people with mobility, vision, hearing and cognitive disabilities.”
​
Apple’s iPad will start supporting third-party eye-tracking hardware, the company said, allowing individuals to control the device with their eyes. And, a new background sounds option is intended to help neurodiverse individuals stay focused and calm by masking unwanted external noises with the continuous audio of a stream, ocean, rain or other balanced, bright or dark noises.

The switch control system that currently offers users alternate ways to control functions on their iPhone or iPad devices will be expanded to allow for control with sounds like a click, pop or “ee,” Apple said, giving more options to those who are nonverbal or who have limited mobility.

Meanwhile, improvements are coming to Apple’s VoiceOver screen reader to allow users to explore objects within images. Apple Watch will become more sensitive to muscle movement and tendon activity to give people with limb differences control over the device without using touch. And, the company is launching a new service called SignTime to allow customers to communicate with Apple support and retail representatives using American Sign Language.

“At Apple, we’ve long felt that the world’s best technology should respond to everyone’s needs, and our teams work relentlessly to build accessibility into everything we make,” said Sarah Herrlinger, Apple’s senior director of global accessibility policy and initiatives. “With these new features, we’re pushing the boundaries of innovation with next-generation technologies that bring the fun and function of Apple technology to even more people — and we can’t wait to share them with our users.”

Access to behavior therapists is woefully lacking in many places, with a new study finding that more than half of the nation’s counties don’t have a single one.

Even in communities with board-certified behavior analysts, or BCBAs, the number of providers available to serve each child with autism varies greatly, researchers found.

The findings come from a study published recently in the journal Autism that looked at all 3,108 counties in the 48 contiguous states and Washington, D.C.

Researchers cross-referenced information from the Behavior Analyst Certification Board’s registry of providers with data from the U.S. Census and the Department of Education’s Civil Rights Data Collection in an effort to estimate both the number of BCBAs and the prevalence of children with autism in each county.

They found that 1,667 counties had no BCBAs. Of those, 325 neighbored counties that also had none of the providers.
There were 784 counties considered to have the highest access to BCBAs, up to 17 children with autism per therapist. On the flip side, the 129 counties with the lowest access had more than 137 kids with the developmental disability per BCBA.

The study notes that the professional organization for BCBAs recommends that each therapist manage six to 12 clients at a time or 12 to 16 if they are supported by an assistant.

The locations with the greatest access to BCBAs tended to be wealthier and had fewer uninsured residents, the study found.

When the researchers examined the 129 counties with the highest prevalence of autism, they found that 55 of them had zero BCBAs. Nine of these counties also had no therapist in any neighboring counties.

“Importantly, the differences in BCBA distribution cannot be fully explained by the county-level variation of ASD prevalence, suggesting that demand for the treatment of ASD is not necessarily driving provider supply,” wrote researchers from the University of Pennsylvania and the University of Louisville in their findings.
​
They point to the location of training programs and varied reimbursement rates as factors that could be driving the availability of BCBAs in various areas, but said more research is needed to fully understand what’s behind the unequal distribution and how to address it.

​by Michelle Diament | May 7, 2021 
Disability Scoop

Nearly two months after federal lawmakers approved billions in extra spending on disability services, advocates say the money is going unspent because states don’t know how it can be used.

The funding was part of the $1.9 trillion COVID-19 relief package signed by President Joe Biden in March. The law included $12.67 billion for Medicaid home and community-based services in the form of a 10% rise in the federal government’s share of spending on the program between April 2021 and March 2022.

But more than a month after the funds became available, states remain reluctant to tap the money without guidance from the Centers for Medicare & Medicaid Services. That’s because states must spend Medicaid dollars and then seek reimbursement from the federal government, so advocates say states are worried that they could be on the hook for the extra spending if they misstep and allocate the funds for something outside of what CMS deems an allowable use.

“Whether states wanted to use the money for hazard pay for direct support professionals or to make transitions out of large congregate settings, states aren’t willing to take a risk until they get the guidance from CMS,” said Nicole Jorwic, senior director of public policy at The Arc.

The long-sought funds represent the first major investment in the disability services system since the pandemic began more than a year ago. In that time, disability providers have struggled to stay afloat amid rising costs for personal protective equipment, COVID-19 testing, cleaning supplies and other items while also facing reduced revenues as programs were forced to close or participation declined.

Now that they finally won a slice of federal COVID-19 relief, however, people with disabilities and service providers are continuing to languish.
“There are people all over the country who have been waiting for programs to reopen,” Jorwic said. “They’re going to keep waiting because states need to know how they can use this money and states need to know that they’re going to get reimbursed.”

Complicating matters is that state Medicaid programs may need approvals from their legislatures to make use of the extra dollars.

“Due to the time constraints of state legislative sessions, many self-advocates and providers are having to pressure their states to commit the money to DSP wages, benefits and other essentials while states are simply waiting to hear from CMS,” said Sarah Meek, senior director of legislative affairs at the American Network of Community Options and Resources, or ANCOR, which represents disability service providers across the nation. “There is a lot of worry that the money won’t actually get to people receiving HCBS and their DSPs as Congress intended if CMS guidance is not released soon.”

A CMS spokesperson told Disability Scoop that they agency is working to release guidance “as soon as feasible.”​

“We understand how important it is that states receive this guidance as soon as possible, to inform their strategies for investing the increased funding so that beneficiaries with long-term services and supports needs receive the assistance required to live in the setting of their choice,” the spokesperson said. “In the meantime, CMS encourages states to be collaborating with their stakeholders to understand their top priorities for strengthening home and community-based services systems.”

Long plagued by high turnover and low pay, new research suggests that the COVID-19 pandemic further amplified the extraordinary pressures on direct support professionals who help people with developmental disabilities in their day-to-day lives.

A survey of more than 8,800 DSPs from across the nation finds that the pandemic squeezed workers in an already difficult profession.
Nearly half of DSPs reported that they had been exposed to COVID-19 at work. And, even though 97% of those surveyed considered themselves essential workers, only about a third received a pay bump or bonus during the pandemic.

The findings are outlined in a new report from the University of Minnesota’s Institute on Community Integration and the National Alliance for Direct Support Professionals. The study is based on a survey conducted between November 2020 and January 2021 that researchers say is the largest of its kind.
The majority of DSPs said that since the pandemic started they have worked at least as much or more than they did previously. Just over half said the places where they work are adequately staffed and only 51% said they are guaranteed paid time off if they display symptoms of COVID-19.

Three-quarters of DSPs indicated that they have been trained to use personal protective equipment and 81% said they had a sufficient supply of the safety gear.
Most DSPs said that the people with disabilities they support are social distancing at a level they consider “good” or “excellent.” However, they indicated that the pandemic has taken a toll on their charges who miss going out into the community and have had less exercise, increased behavior issues and mood swings, anxiety, loneliness and boredom.
​
“These findings underscore a number of systemic problems regarding the direct support workforce that provides services and supports for people with intellectual and developmental disabilities,” said Amy Hewitt, director of the Institute on Community Integration’s Research and Training Center on Community Living and a lead author of the study. “Turnover, vacancies and low wages — a national average that is just more than $12 an hour — has devastating effects on these professionals and, subsequently, on people with intellectual and developmental disabilities.”

by Peg DeGrassa pdegrassa@21st-centurymedia.com @ PeggyDe5 pn Twitter

MEDIA — The COVID-19 pandemic has been rough on mostly everyone, but the population’s most vulnerable individuals have perhaps suffered the most. Since last March, individuals with intellectual and developmental disabilities, whose lives often thrive on the stability of routine, have had their worlds overturned and their lives have become anything but routine.

Individuals with intellectual and developmental disabilities who use licensed and unlicensed residential services number almost 15,000, according to state statistics. Just like their counterpart facilities serving elderly and physically disabled individuals, residential facilities serving those with intellectual and developmental disabilities also locked down last March. Many residents with intellectual and developmental disabilities, in an effort to stop the spread of COVID, were unable to have visits from family or any other outside guests and were prohibited from going home for visits or out in the community. Heroic, dedicated staff put their lives on the line, risking their health and the health of their families, by continuing in their positions at the residences.

Over 5,644 individuals in Pennsylvania with intellectual and developmental disabilities use Participant Directed Services, meaning their funding does not go through a service provider. Rather, these individuals live with their family, in their own homes, or in another private living arrangement in the community. This number is growing steadily. Through waiver funding, individuals with Special Needs, who live in the community are supported by Direct Support Professionals, who can be their friends, neighbors, certain family members, or professionals in the field. During the pandemic, families are calling their professionals their heroes, because they risk their lives to continue coming into private homes to offer support. With those they support no longer able to access day programs, jobs, workshops and activities in the community, the professionals creatively revised the ways that they offered support.

"We as advocates for individuals with intellectual and developmental disabilities and their families have long been well aware of the vital role that professionals play in supporting those individuals and families,” stated Eileen MacDonald, executive director of Delaware County Advocacy and Resource Organization in Swarthmore. “Their dedicated service and support to our most vulnerable population has long been overlooked and undervalued. Their presence, persistence, care and dedication have the most significant impact on the lives of the individuals they serve and their families at every level.  The COVID-19 pandemic has presented all of us with significant challenges, but none more than to the intellectual and developmental disabilities population.”

“I honestly don’t know what we would do without our Direct Support Professionals — people don’t realize how important they are in the lives of our sons and daughters,” expressed Donna Wetherill, who lives with her husband Rus and son Matt in Secane. “I can’t say enough good things about the DSPs and the wonderful things that they do!”

Matt’s professional, Shawn Korp, of Philadelphia, has been with Values Into Action in Media for five years. Before the pandemic, Korp supported three male individuals. In an effort to limit contact during the pandemic, he is currently supporting two of the three. He has worked one-on-one with Matt for about four years.

Pre-pandemic, Matt, who has Down syndrome, severe autism, sensory integration disorder, seizures, orthopedic issues and uses a speech device, was very active in the local community. He spent one to two days a week, doing shredding at the Office of Intellectual Disabilities in Upper Darby. Neither Rus or Donna drive. Rus is the assistant IT director for Delta Community Supports and Donna is the director of Pennhurst monitoring for DCARO. Recently disabled with physical limitations themselves, they both currently work from home and depended on Shawn to take Matt to his job, as well as accompany Matt on his volunteer mission at Meals on Wheels through the Media Senior Center, and other community outings. Before they became housebound, Shawn and Matt would go to the YMCA, the zoo, the theatre, concerts, day trips and parks.

“They would be out and about the entire day,” Donna said. “Usually they wouldn’t come home until 5 or 6 o’clock!”

Last March all of that came to an abrupt halt. Donna says her son doesn’t understand all the changes. He becomes easily frustrated. He’s behind on all his medical appointments. Without his normal routine, severe sleep issues have returned and he’s up half of the night.

“They used to go out all the time,” she says of her son and his one-to-one professional. “Now Matt’s only outing is an occasional car ride. I shudder to think what Matt's life-- all of our lives-- would be like during this pandemic without his Direct Support Professionals.”

Shawn Korp has stepped up to the plate to revise the ways Matt can continue to live his best life during the pandemic.

“Matt was so used to being out in the community — this has truly been a learning process for us both,” Korp explained. “He has learned a new order and is becoming much more independent in his home.”

Instead of dropping off his laundry once a week to get washed and folded and then picked up, Matt and his professional now do the laundry, which teaches him a life skill. Korp has devised a daily routine to eat breakfast, do dishes, enjoy music time do other tasks around the house and take car rides to places that they used to enjoy, just to talk about the memories. He said he’s also teaching Matt how to use an iPod to choose his own music selections.

“We haven’t attempted going anywhere in the community yet, because Matt has trouble with personal space,” Korp explained. “I enjoy the one-on- one work because I feel like I am helping Matt live a life that is ‘normal. Together, we are trying to make the best out of the situation.’”

Both 29 years of age, Matt and Shawn look forward to both being fully vaccinated so they can maybe get out some this summer and do some of the things that they used to enjoy together.

Tina Feoli of Deptford, New Jersey has been supporting Erin Perry, 28, of Clifton Heights for as long as she can remember. She has known her, and her parents, John and Kathy Perry, for over 20 years, she said. In addition to her role as a Direct Support Professional with Erin, Feoli is a Student Assistance Counselor for the Delsea School District in Franklinville, N.J., working with at-risk students.
Pre-pandemic, Erin had a busy and productive life. In addition to spending time with friends and family out in the community, she had a job at the local AMC movie theatre. Once March 10 came, everything changed.

Mom Kathy is the Associate Director of In Home and Community Supports at Values Into Action. She began to work remotely at home. Dad John is an ER tech at Children’s Hospital of Philadelphia. Feeling they were all at high risk, the family made a decision to not allow any professionals come and go in their home, even though Erin, who has Down Syndrome, was approved through a waiver to have 40 hours a week in support.

“Individuals with Down Syndrome are ten times more likely to die from COVID,” Kathy explained. “The risk was too high for us to take.”

Although Erin previously had eight professionals, she is now down to three and all are doing remote support for six to ten hours per week, using creativity and ingenuity to keep Erin from regressing or feeling socially isolated.

“I am so impressed with Erin’s staff,” Kathy said. “They were ready to pivot on a dime and make the remote support work. At first, it was really difficult. For the first eight months, Erin would ask us if she could go back to work. She was on an emotional roller coaster with her whole routine switched up. But now, we realize that even during these challenging times, she is still learning and growing, thanks to her DSPs.”

Feoli said that Erin has increased her patience and her technology skills, with much of the remote support taking place on the Zoom platform. Erin and her staff have done work-outs to Disney Zumba, talked while both coloring in adult coloring books, took virtual tours of places like zoos, Disney World, Hershey Park, and the Caribbean Islands, and even baked together. Feoli and Erin each had their own box of brownies in hand, while Feoli read over Zoom what ingredients to get, what steps to take, when to get a potholder, and more.
“We feel very fortunate to be afforded this opportunity to still stay connected with Erin on a regular basis,” Feoli said of their remote support. “Through our relationship, I have watched her grow and become more independent. I’ve watched the joy and light come back to her eyes, as she learns and lives her best life, even during these trying times. When I see her smile, I know she will be alright.”

The funds for Person Directed Services go through one of two financial management services organizations, and the person or their surrogate has control over their services, their staff support, including wages, within an approved range, and essentially all aspects of their supports, and their lives.  People using Person Directed Services also can use a Supports Broker to assist them with employer related duties, compliance tasks and to build a strong and sustaining system of supports.

Marian Frattarola-Saulino, MSW, is co-founder and executive director of Values Into Action, a provider of direct services and supports brokerage in Pennsylvania and New Jersey. The nonprofit has a mission of customizing its services to help individuals with intellectual and developmental disabilities create and build meaningful relationships and connections in their community and live their best life.

“Our experience in supporting people and their families through this pandemic has given us opportunities to broaden our definition of support, to adapt to changing needs and to embed our person-directed, family centered approach in organizational policies and practices that have helped all our stakeholders mitigate and, in most cases, prevent exposure to COVID-19,” Frattarola-Saulino said. “What's been most important from our experience and perspective during this time, is the degree to which people have control over their lives -- where they live, who lives with them, who is coming into their home, what type of support is being provided and how that support is provided. All of this personal control has a direct and positive impact on a person's safety and well-being.  This has always been the case (with Person Driven Services) and the pandemic has certainly highlighted this issue.”

 Frattarola-Saulino said families who have been able to be paid to provide the support their disabled family member needs, have ensured that vulnerable members have not been exposed to people unwittingly and unknowingly carrying the virus to them from outside their home. 
“When you compare this to people living with others not related to them in group homes and facilities who have little to no control over who comes in and out, it’s no wonder they have unfortunately fared far worse overall,” the VIA director explained.

During the COVID pandemic, Direct Support Professionals working in private homes also had a better safety rate than those working in group facilities, as they were only exposed to the individual whom they are supporting and their family.
In late February 2020, Values Into Action created an Emergency Preparation Team comprised of all organizational stakeholders. They created worst case scenarios and planned from those perspectives, because they wanted to protect the professionals, as well as those individuals whom they serve. Frattarola-Saulino said that she knows the vital importance of DSPs and their value to those with intellectual and developmental disabilities and their families. She has seen it first hand, over and over again.

“Before the government offered PPP, we adapted our policies to ensure every Direct Support Professional was paid for time off, regardless of their employment status,” Frattarola-Saulino stated. “If they experienced symptoms or if they or their family members were exposed, we did not want fear of loss of income or employment to impact their judgement about coming to work when there was risk of infecting others.”

Once the PPP was received, VIA immediately raised every Direct Support worker's hourly wage and revised support schedules in partnership with people and their families to ensure minimal contact with other colleagues when providing in- person support. VIA also began offering remote and virtual supervision and support when appropriate.  For those always needing support, VIA arranged for live-in scheduling and paid the worker a premium to provide support in this way.  

“We cannot say enough about our colleagues providing direct support, “Frattarola-Saulino said. “We (VIA) could not have continued to provide the services and supports people and their families needed during this unprecedented time without them.  We are committed to not reducing their wages once we are through this, and to that end we hope to gain support of our fellow service providers, our communities and of our legislative leaders to truly acknowledge the absolute necessity of those providing direct services in partnership with people with disabilities choosing to live in their own homes or with their families.   We know now that person directed, family centered services must be a matter of choice, not chance.”

Jessica Clark, 38, of Glen Mills, has Down syndrome and is legally blind. She lives with her mother Joann Clark, who has been widowed since 2009. She received a consolidated waiver after her high school years and receives about 40-45 hours of support services each week.

After attending Elwyn Preschool, Jessica went on to get a Montessori education at the Walden School in Media. After participating in the DCIU Options Program, Jessica worked at Justice in Brinton Lake before it shut down and then was fortunate to transition into her role as a “Girl Friday” at her alma mater. Since 2003, she has been dedicated to helping out in the classrooms and performing other tasks at Walden School. For 25 years, she has also been an active altar server and helpful parishioner at St. John Chrysostom Catholic Church in Wallingford.

Since last March, Jessica has been on hiatus from the Walden School job and other activities that she previously enjoyed. With the help of her professionals, she is still in the process of revising her life until things open up again. Mom Joann said her only child could no longer go out into the community to risk exposure to the coronavirus since her conditions make her vulnerable.

To curtail exposure, mom Joann has limited her professionals to two individuals who continue to support Jessica—Cathy Hinkle and Marelys Rodriguez.

Rodriguez, of Upper Darby, has been a Direct Support Professional with Values Into Action for five years. She has supported Jessica since 2015.
“Jessica has become like a sister to me,” she said.

Since the pandemic has made Jessica homebound, the professional has refashioned her time with her to learn new skills for enrichment and education.
She has taught Jessica new household chores and new organizational skills, how to do laundry, make her bed, and help mom out more. The pair has developed a routine that often includes time with adult coloring books, watching movies, learning computer skills, cooking and baking, and arts and crafts.

She now livestreams Sunday Mass, the Stations of the Cross, and other church services, and takes virtual tours of interesting places on the computer. Jessica is a big Disney fan, Marelys said, so she’s thankful for the debut of Disney Plus so they can watch 90’s Disney shows together. Jessica is also learning to order the household groceries for delivery or to pick up curbside.

“We do a lot of brainstorming,” Rodriguez shared. “I am constantly thinking how I can fill our time together with things that are meaningful for Jess, since she is not seeing her friends or being active out in the community. I want her to have something to look forward to. We talk a lot, about feelings and other stuff. I want to be an ear for her, a different face — I want to help her accomplish things that will bring her joy.”

Frattarola-Saulino said, despite the tragedy and loss, the challenges of these unprecedented times, created an opportunity to shift the system and show the need to honor and support people with intellectual and developmental disabilities and their families as the experts of their own lives.

“We can either embrace this shift or we can keep the status quo, knowing now that outdated models of support do not keep anyone safe,” Frattarola-Saulino remarked. “In fact, it has exacerbated this public health situation.  As a community, as a system dedicated in word to ensuring an Everyday Life for everyone, we have the chance to live it in deed as well.”
​​
“DSPs have ‘heroed’ through this pandemic, continuing to provide the service and support so needed by our IDD individuals,” MacDonald said. “It is our hope that this pandemic will finally educate people to the essential role DSPs play as well as the need to provide DSPs with a living wage.  We at DCARO applaud the selfless efforts of all Direct Support Professionals who continue to directly support individuals with intellectual and developmental disabilities throughout the COVID-19 pandemic."