Disability Service Providers On Brink Of Collapse
Chris Serres, Star Tribune/TNS • June 26, 2020
MINNEAPOLIS — For more than four decades, Options, Inc. in Big Lake has helped hundreds of people with intellectual and developmental disabilities find jobs in the mainstream workforce, while serving as a refuge for people who have nowhere to go during the day.
But when the nonprofit’s board recently analyzed its finances, the outlook was grim. Revenue at the day and employment service provider had plunged 80 percent since the pandemic began, while costs for its building and fleet of vans continued to pile up. The monthly losses had reached $100,000.
“We are in a constant state of distress,” said Brenda Geldert, executive director of Options. “It’s going to be impossible to survive unless we get some relief.”
The coronavirus is inflicting a heavy toll on Minnesota’s sprawling network of government-supported centers that provide jobs training, mental health therapy and other services for more than 30,000 adults with disabilities. Dozens of centers have been forced to close temporarily since March because of severe restrictions meant to slow the spread of the virus.
Now, after months of layoffs and furloughs, there are growing fears that this often-overlooked piece of the social safety net may collapse, leaving thousands in the lurch.
Advocates fear that the vulnerable populations that these centers serve — with disabilities as varied as autism, cerebral palsy and traumatic brain injuries — have become increasingly isolated and are not getting adequate therapy and daily stimulation. Many have been confined to four-bedroom group homes where the coronavirus has already struck. Statewide, more than 300 residents of group homes have contracted the virus and at least 19 have died, state health officials said.
At a legislative hearing Thursday, executives with a half-dozen of the state’s largest disability service providers from across the state sounded the alarm, warning they are running out of cash and may not be able to survive the summer without emergency funding. They are supporting legislation that would grant them $30 million in government grants to stay afloat until the COVID-19 restrictions are lifted and the centers can fully reopen. A relief package passed the Minnesota Senate during the special session by a 67-0 vote, but never came to a vote in the House.
“Our entire disabilities services sector is on the verge of collapse,” warned state Sen. Jim Abeler, chairman of the Human Services Reform Finance and Policy Committee, which held the hearing.
Minnesota’s disability service providers have been hemorrhaging cash since late March, when new federal guidance limited gatherings to curb the spread of the coronavirus. Day and employment centers were considered especially vulnerable: People are interacting with one another in closed environments for prolonged periods. There was also fear that they could bring the coronavirus back to their group homes, potentially exposing more people in closed settings.
In sometimes emotional testimony Thursday, one nonprofit executive after another described how the coronavirus had ravaged their operations, resulting in six-figure monthly losses, layoffs and rapidly depleting cash reserves. Many expressed frustration that, more than three months into the pandemic, the administration of Gov. Tim Walz had not come forward sooner with a rescue package.
At one point during the hearing, Abeler waved a copy of the relief bill in the air and urged Walz to sign an executive order approving the money.
“Governor Walz, would you please rescue the disability service sector in Minnesota?” Abeler asked. He added, “This is just so urgent. Clients literally will not thrive … Some people will die.”
Dawn Lamping, executive director of Floodwood Services and Training Inc., a day and employment provider about 40 miles west of Duluth, said monthly revenue has depleted by 95 percent since the pandemic began. Without emergency funding, the program that serves about 60 adults with disabilities would run out of cash and be forced to close within six weeks.
“Over the last 43 years, (Floodwood Services and Training) has weathered some challenging times, but none have been as challenging or devastating as the current crisis,” Lamping said, choking up several times during her testimony. “Unless our program receives emergency funding very soon, we will close.”
In many rural communities, day service providers are major hubs of activity. They shuttle people to and from work and activities in the community, and provide a destination during the day for people with severe disabilities who might otherwise be isolated in group homes. In recent years, under pressure from the courts and federal regulators, they have begun providing more job and vocational services in the community.
Melissa Winger of Bloomington said she has become increasingly concerned about the emotional and physical well-being of her 24-year-old son since his day program closed on March 17. Each morning, he would carefully prepare his backpack and wait in the lobby for the day program van, which would often take him to outings in the community. When the program closed, he became so upset by the rupture in his routine that he repeatedly banged his head against the wall of his group home, breaking his nose.
Now her son has nowhere to go during the day, except on walks around the perimeter of his group home in Plymouth, his mother said.
“This is a pretty traumatic situation for someone like my son who thrives on socialization,” Winger said. “You put an abrupt end to everything they know and they don’t have the ability to understand why.”
© 2020 Star Tribune
Distributed by Tribune Content Agency, LLC
President Donald Trump wants to cut $163 billion in federal spending next year, potentially zeroing out key disability programs, some of which are already pausing services because they’re running out of money. The White House unveiled a budget summary late last week known as a “skinny budget” that calls on Congress to slash funding for non-defense discretionary spending by 22.6% for the fiscal year starting in October. This would affect programs that Congress reauthorizes annually, but does not include mandatory programs like Medicare, Medicaid and Social Security. The summary offers little detail about how many disability programs would be impacted. However, a widely circulated budget document leaked last month from the U.S. Department of Health and Human Services offers clues. That document shows that the Trump administration wants to eliminate funding for protection and advocacy agencies, state councils on developmental disabilities, the lifespan respite program and university centers on developmental disabilities, among other programs, advocates say. The targeted disability programs are housed within the Administration for Community Living, which HHS said in March that it plans to break up. Jill Jacobs, executive director of the National Association of Councils on Developmental Disabilities, said she had hoped that Trump’s skinny budget would allay concerns about the leaked HHS budget, but she indicated that it ended up doing “just the opposite.” “It shows absolutely nothing about any Administration for Community Living (ACL) funding at all. Other operating divisions within HHS are identified, but there is nothing about disability, nothing about aging, nothing at all under the HHS category,” Jacobs said. “This makes things even more confusing — and worrisome.” Already many developmental disability programs are being squeezed because HHS has delayed distributing funding that was authorized by Congress in March. In recent weeks, Disability Rights New Jersey, Disability Rights Mississippi and Disability Rights Arkansas have announced that they would halt certain services — either temporarily or indefinitely — because they are running out of money. The groups are all federally mandated protection and advocacy organizations, or P&As, which exist in each state to provide free legal and advocacy services to individuals with disabilities. The organizations help students with disabilities access school services, investigate abuse and neglect in both private and state-run facilities for those with developmental disabilities and much more. “Our agency has been serving individuals with disabilities since the early 1980s, and this is the first time that we have had to cease taking new cases agency-wide. Congress has already approved (and) allotted these monies for our agency — we just are waiting to receive it,” said Polly Tribble, executive director of Disability Rights Mississippi. “Our federal mandate is to protect and advocate for vulnerable people in Mississippi and to root out abuse, neglect, and exploitation, but without our promised funding, if someone calls tomorrow and needs assistance, we can only refer them to another agency.” Tribble noted that the other agencies they refer to are also dealing with cuts and delays in federal funding. “If this crisis is not resolved immediately, we are facing devastating layoffs that will severely compromise our ability to protect and serve the disability community,” Tribble said. These organizations are not likely to be the last ones curtailing services, said Eric Buehlmann, deputy executive director for public policy at the National Disability Rights Network, an umbrella organization for P&As across the country. “Ultimately all P&As will be effected because they will run out funding to pay for staff and services,” he said. Representatives from HHS did not initially respond to questions about the payment delays, but the agency said on Monday that more than $1.1 billion in funding that Congress approved in March will be released by the Administration for Community Living in the next two weeks. The president’s skinny budget spells out cuts at the Centers for Medicare and Medicaid Services, the Centers for Disease Control and Prevention and the National Institutes of Health, among others. It seeks to consolidate housing assistance for people with disabilities with other programs and cut their funding. Spending on special education services would remain level, per the plan. But, seven programs under the Individuals with Disabilities Education Act would be consolidated to give “states and school districts greater flexibility” and funding for the Department of Education’s Office for Civil Rights would be chopped by 35%. “Level funding IDEA in particular — as proposed by the White House — is actually a cut,” said Denise S. Marshall, CEO of the Council of Parent Attorneys and Advocates, or COPAA, a nonprofit that advocates for the rights of students with disabilities and their families. That’s because funding has been static since 2023 even as the number of students with disabilities has grown, she said. The focus on cuts has advocates alarmed and programs operating in survival mode. “All of the uncertainty around funding has meant that disability programs are having to spend precious time and resources on contingency planning instead of focusing on supporting people with disabilities and their families,” said Alison Barkoff, a professor at George Washington University who led the Administration for Community Living under the Biden administration. “Programs that are critical to people with disabilities and their families are at serious risk now and heading into the next fiscal year,” she said, emphasizing that “the risk has never been more serious.” CITATION: [ORIGINAL ARTICLE] Nation’s Disability Services System Begins To Buckle As Funding Threats Intensify: https://tinyurl.com/8c7yx375
The moment that 20-year-old Eric Carpenter-Grantham of Silver Spring had prayed for finally came to Annapolis this year, when both chambers of the Maryland General Assembly passed the bill that he and his mother had championed. “ Eric’s ID Law ” will allow Maryland residents with “non-apparent disabilities” to opt in to a program that will place a butterfly emblem on their state ID or driver’s license. That symbol isn’t just a decorative flourish. It will indicate to anyone looking at it that the holder of that license or ID has a disability that isn’t immediately obvious. That could include deafness, autism, developmental disabilities or a mental health issue. Linda Carpenter-Grantham, Eric’s mother, explained the idea for the butterfly license came after the two had a hard conversation after the death of George Floyd at the hands of Minneapolis police in 2020. Eric has autism, and his mom explained to WTOP that as the mother of a young Black man with a disability, Floyd’s death left her worried. After their conversation, she explained that Eric, a teenager at the time, “was in tears, he was crying, and he said ‘Mom, we’ve got to do something.'” Eric told his mother that he had an idea: “I would like to make something to go onto the ID so that the police will know that me and my friends have autism so that they won’t hurt us if we ever get stopped,'” Linda said. Eric, who has plans to become a pastor, said he “was praying to God” to send him the right symbol to use. “We were thinking about different things like a star,” he said. But then the butterfly magnets they had on their refrigerator at home came to mind. “So I said, ‘Let’s do a butterfly. The butterfly represents hope, peace, freedom and change,'” he said, and that became the centerpiece of their campaign. “We just want to thank every single person who supported this bill from Day One!” Eric said. His future plans include going to college to get a degree in political science, and to eventually become a pastor. “We’re just waiting for the date when the governor will sign the bill, and we’re super excited to stand there and watch him sign it and receive the ink pen!” she said, referring to the custom of passing the pens used to sign bills into law to the people who worked to get the legislation passed. Citations: [ORIGINAL ARTICLE] Maryland drivers with ‘hidden disabilities’ could get butterflies on their licenses: https://tinyurl.com/54upd5tw
A documentary about the decades-long fight for disability rights culminating in the passage of the Americans with Disabilities Act is set to premiere. The film “Change, Not Charity: The Americans with Disabilities Act” follows the twists and turns of a grassroots movement that pushed Congress to mandate curb cuts, ramps and much more to allow people with disabilities access to American life. Relying on archival footage and interviews with activists, lawmakers and other key players, the one-hour film chronicles how the disability rights movement organized and took to the streets to lobby for the ADA in the face of strong opposition. Things came to a head with the “Capitol Crawl,” when people with disabilities including many wheelchair users dragged themselves up the steps of the U.S. Capitol, leading to the 1990 signing of the ADA. “I think the message of this film is that civil rights for people with disabilities are just as important as the rights that everyone either has or should have in our society,” said the film’s director, Jim LeBrecht, who has a disability and who is known for his work on “Crip Camp,” an Oscar-nominated documentary [01] about the origins of the disability rights movement. “There was a coming together of many people, disabled and non-disabled people. Legislators from both sides of the aisle came together in a bipartisan fashion,” he said, referring to the ADA. “I hope that our film will remind our viewers and those in power, that preserving the civil and human rights of people with disabilities benefits everyone.” Narrated by actor Peter Dinklage, “Change, Not Charity: The Americans with Disabilities Act” will air on PBS March 25 at 9 p.m. ET on “American Experience.” Citations: IMDB Webpage for Crip Camp: https://www.imdb.com/title/tt8923484 Original Article: [ARTICLE] PBS To Spotlight Story Behind The ADA: https://www.disabilityscoop.com
Paid family leave, energy projects, and state employee wages taking a hit as DDA, other programs gain in latest spending plan.
BALTIMORE -- A proposed bill in Maryland would allow residents to disclose "nonapparent disabilities" on their driver's licenses or identification cards. Eric's ID Law, or HB707, [01] would require the Motor Vehicle Administration (MVA) to add a certain symbol to licenses, ID cards or moped permits indicating that the applicant has a nonapparent disability. The idea was proposed by a Maryland family during an appearance on ABC's "The View," The Baltimore Banner reported. [02] The Carpenter-Grantham family had the idea after the 2020 murder of George Floyd [03] which sparked protests across the nation. "I realized that I have an African American son with an invisible disability," mother Linda Carpenter-Grantham said during the TV appearance. The bill was introduced in the state Senate during the 2024 legislative session but missed a deadline in the House. The proposed bill would require the MVA to establish public outreach programs to educate the public about the new symbols or notations. The MVA would work with disability advocates to design the symbols. The MVA would be prohibited from sharing information about an applicant's disabilities. The bill would also prevent the MVA from asking an applicant to provide proof of their disability or reject an application because the listed disability does not match other documents associated with the applicant. Under the bill, the Maryland Police Training and Standards Commission and Department of State Police would have to immediately implement training for police interactions with those who have nonapparent disabilities noted on their IDs. The bill will be the subject of a hearing on Feb. 13 at 1 p.m. What is a nonapparent disability? According to the proposed bill, a nonapparent disability is a health condition that is not immediately obvious or visible, this could include developmental or intellectual disabilities. According to a study by the National Institutes of Health (NIH), [04] common nonapparent disabilities are anxiety and depression, Alzheimer's, deafness, post-traumatic stress disorder (PTSD), attention-deficit hyperactivity disorder/attention deficit disorder (ADHD/ADD), and diabetes among others. People with developmental disabilities are about seven times more likely to encounter law enforcement than neurotypical individuals, according to a 2001 study by the Department of Justice. [05] Citations: [WEBSITE] Legislation: Eric's ID Law , or HB707: https://tinyurl.com/4r5s8ntp [ARTICLE] Maryland mom and her autistic son pitch a disability safety bill on ABC’s ‘The View’: https://tinyurl.com/4nzukspm [ARTICLE] George Floyd's death sparks large protests, confrontations with police: https://tinyurl.com/263hk9sk [STUDY] Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations: https://tinyurl.com/bdexd9js [ABSTRACT] Contact with Individuals with Autism: Effective Resolutions: https://tinyurl.com/56d6yd44 [ORIGINAL ARTICLE] Proposed bill would allow Marylanders to disclose nonapparent disabilities on their IDs: https://tinyurl.com/9k7z6nyh
Advocates and service providers on the Eastern Shore are joining Maryland’s disability community to call for rollbacks on projected cuts to funding for developmental disability services. Scott Evans, executive director of the Benedictine School in Ridgely, said the near $200 million in cuts to Developmental Disabilities Administration funding outlined in Gov. Wes Moore’s proposed budget would be the worst he’s seen in his 25-year career. “Bottom line, these proposed cuts of close to $200 million in state funds would be catastrophic to the community service providers, as well as the people we support and our employees,” Evans said. “It would literally set us back years in funding.” The proposed cuts come as the state faces a near $3 billion deficit. Some advocates from the Eastern Shore note they could reduce the choices available for families and people with disabilities. Jonathon Rondeau, president and CEO of The Arc Central Chesapeake Region, says families and people with developmental disabilities on the Eastern Shore already have a limited number of options. “There are less agencies providing services for people with disabilities on the Shore,” Rondeau said. “So if there is instability in the system, it can potentially reduce choice for people with disabilities.” Evans echoed the same sentiment, and added that the cuts could hurt Benedictine’s ability to stay competitive when hiring employees. In recent years, the nonprofit school and service provider has raised wages in an attempt to attract quality employees. “All that has been an investment we’ve made because of the funding that we have received,” Evans said. “Now to wipe that funding out basically overnight means that we’re stuck in a holding pattern.” THE CUTS In Moore’s budget proposal, his office notes that in addition to the $1.3 billion set for the Developmental Disabilities Administration in fiscal year 2026, the state will “better leverage federal funding and align Maryland’s program more closely with federal guidance and practices across other states.” Evans says it’s not clear how DDA would implement the cuts, though his team at Benedictine team is working to crunch the numbers. Evans said it would cost the school hundreds of thousands of dollars of funding at the very least. Specific cuts that worry advocates include reductions in “dedicated hours” funding for those in community living programs, as well as a $14.5 million blow to self-directed services funding. “Someone who is in their late 60s and retired and chooses to stay home every day rather than going to a day program won’t necessarily have that choice anymore,” Rondeau said regarding the dedicated hours cuts. “There won’t be the funding available for that. It’ll be difficult for providers such as The Arc to support someone who may have significant health issues and need to go to the doctors.” Karenna Jones of Salisbury worries that cuts to self-directed services will impact the ability for her family to take care of her 26-year-old son, Kenneth, who has a traumatic brain injury and lives at home. Jones says as long as she lives, she “would never put (her) kid in a provider home.” But large cuts in funding may leave her with no choice. “We might be forced to do that,” Jones said. “It’s not fair.” RALLY IN ANNAPOLIS With the uncertainty swirling, hundreds packed Lawyers Mall in Annapolis Monday night, protesting for legislators to reject the proposed cuts. Leaders at the Benedictine School and The Arc Central Chesapeake Region attended, as did Jones. “I’m always amazed at how quickly the folks within the disability community can rally around a cause, and a cause that means so much to them,” Evans said. “And also, to some extent, the positive response we’ve gotten from legislators about these cuts.” Jones said the rally — organized with just three days notice by a developmental disability coalition — was inspiring and beautiful. “We were saying, ‘Save our DDA services. Save it. Don’t leave us behind,’” Jones said. Citations : [ORIGINAL ARTICLE] ‘Catastrophic:’ Eastern Shore advocates share impacts proposed disability cuts may bring: https://tinyurl.com/5ahffbu8
State Sen. Craig J. Zucker (D-Montgomery), who has a son with autism, promises to be community's ally.
Despite concerns about his history promoting a debunked link between autism and vaccines, a key U.S. Senate panel advanced Robert F. Kennedy Jr.’s nomination to become the nation’s health secretary. The Senate Finance Committee voted 14 to 13 this week along party lines to send Kennedy’s nomination to the full Senate, which will have final say over whether he will take over the Department of Health and Human Services. The vote came after Sen. Bill Cassidy, R-La., said he would back Kennedy despite expressing reservations just days earlier over his anti-vaccine past. Kennedy has spent years blaming the increase in autism prevalence on childhood vaccinations. During confirmation hearings last week, Cassidy, a medical doctor, unsuccessfully pressured [01] Kennedy to concede that there is no link between autism and vaccines. But, Cassidy said he ultimately decided to back Kennedy after receiving “serious commitments” from the Trump administration. Specifically, Cassidy indicated that he’s been assured that the Centers for Disease Control and Prevention will not remove statements on its website highlighting that vaccines do not cause autism. Kennedy also committed to “work within current vaccine approval and safety monitoring systems and not establish parallel systems” and “maintain the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices recommendations without changes,” Cassidy said. While Kennedy’s nomination is not guaranteed, Cassidy had been viewed as a significant question mark and his support will ease the path to full Senate confirmation. President Donald Trump has said [02] that he’s “open to anything” when it comes to investigating the increase in autism prevalence in recent decades and he’s suggested that Kennedy would have leeway to look into the causes of autism including the long-discredited connection between autism and vaccines. “20 years ago, Autism in children was 1 in 10,000. NOW IT’S 1 in 34. WOW! Something’s really wrong. We need BOBBY!!! Thank You! DJT,” Trump posted to social media just before the Senate committee met to vote this week. In fact, the latest CDC estimates suggest 1 in 36 children [03] have autism compared to 1 in 150 in 2000. Kennedy’s nomination is raising concerns for several national autism and disability organizations. A dozen groups including the Autism Society of America, the Autistic Self Advocacy Network, the National Association of Councils on Developmental Disabilities and The Arc of the United States put out a statement ahead of Kennedy’s confirmation hearings saying that vaccines do not cause autism. “Perpetuating myths linking vaccines to autism does a disservice to the autism community by distracting from their pressing healthcare needs,” the groups said. Instead, the organizations indicated that policymakers should focus on actual needs in the autism community such as access to health care, mental health services, education and more. “The Autism Society is still very disturbed that Mr. Kennedy has not clearly stated that vaccines are not linked to autism,” Christopher Banks, president and CEO of the Autism Society of America, said after Kennedy’s nomination advanced. “Any direction to reinvestigate debunked myths, will reverse progress, and deter funding that addresses healthcare inequities and services that the autism community needs now.” Citations: [ARTICLE] HH S Nominee RFK Jr. declines to reject vaccine autism link: https://tinyurl.com/mkfpb32s [ARTICLE] Trump signals his administration will investigate debunked link between vaccines and autism: https://tinyurl.com/334jkspd [ARTICLE] Autism now affects 1 in 36 kids CDC says: https://tinyurl.com/3m5hve86 [ORIGINAL ARTICLE] Autism Takes Center Stage As RFK Jr. Nomination For HHS Secretary Advances: https://tinyurl.com/jmephrju
Despite some conversations between state officials and the disability community, advocates say they’re not being heard.
New estimates show that 61.8 million people around the globe have autism and that the developmental disability is among the most common health issues facing youth. As of 2021, researchers found that 1 in 127 people worldwide were on the spectrum, according to findings published [01] recently in the journal The Lancet. Autism was twice as likely to affect males versus females and there was high prevalence among young people, with the condition ranking in the top 10 causes of non-fatal health burden for those under age 20, the study found. The findings are based on a review of studies and data that was conducted as part of the Global Burden of Diseases 2021 Study, which is considered the largest scientific effort to measure the prevalence and impact of various conditions. The autism rate identified in the new study “substantially changed estimates” from the last version of the report in 2019, but the researchers attributed the increase to updates in their methodology, in particular excluding studies that were likely to undercount prevalence. Researchers identified variances in prevalence by geography with autism affecting 1 in 163 people in tropical Latin America versus 1 in 65 people in the higher-income Asia Pacific region. “There are many factors contributing to this wide range, including varying exposures to risk factors, cultural variation, behavioral norms, or screening tools and diagnostic tools being used in those locations, and also how people are responding to these surveys, or whether they even choose to respond or participate in the survey in the first place,” said Dr. Damian Santomauro, an affiliate assistant professor at the Institute for Health Metrics and Evaluation at the University of Washington who led the study. “Work is currently ongoing to explore ways to quantify and correct for these differences so we can paint the most accurate picture of the prevalence of autism globally.” The latest estimates from the Centers for Disease Control and Prevention [02] indicate that 1 in 36 American children are on the autism spectrum. That figure is based on data collected on 8-year-olds in 2020. By contrast the rate was 1 in 150 in 2000. Experts attribute the rise in diagnosis to greater awareness of the developmental disorder. Those behind the new study say they hope their findings will prompt better policies and greater supports for individuals with autism around the world. “The prevalence and health burden of autism persisted across the lifespan,” Santomauro said. “These findings highlight the need for early detection and lifelong supportive services for autistic individuals.” Citations: [ARTICLE] The global epidemiology and health burden of the autism spectrum: findings from the Global Burden of Disease Study 2021: https://tinyurl.com/4xwk9ebm [ARTICLE] Autism now affects 1 in 36 kids, CDC says: https://tinyurl.com/3m5hve86 [ORIGINAL ARTICLE] Autism Affects More Than 60 Million Worldwide, Study Finds: https://tinyurl.com/24fz2bs3
