VOR Weekly News Update
VOR is a national non-profit organization that advocates for
high quality care and human rights for all people with
intellectual and developmental disabilities.
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VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities
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In recent weeks, we have seen the passing of the American Rescue Plan and the introduction of the Better Care Better Jobs Act. Both of these pieces of legislation are products of advocates like the Arc, ANCOR, and other groups steeped in inclusionism and one-size-fits-all ideologies who have lobbied both the Biden Administration and influential Members of Congress.
These bills are aimed at providing additional funding in support of people with I/DD who receive Medicaid support through Home and Community Based Services (HCBS) and in support of Direct Support Professionals (DSPs) who work in HCBS settings.
These bills do not offer equivalent funding or support for individuals receiving Medicaid support who live in Intermediate Care Facilities (ICFs), nor do they provide support for the DSPs who provide care and treatment for those who live in ICFs.
This is not meant to say that there aren't good provisions in these bills, for both the disability community and the aging community. Still, one might get the impression that these organizations and the lawmakers who respond to their lobbying don't care about people whose high levels of need lead their families to seeking higher levels of care in ICFs, and that they hope that by refusing to acknowledge those individuals and their caregivers, they may just disappear. Or worse.
VOR, Together For Choice, and other organizations and individuals are working to change all of that. Our goal is to find ways to make Congress acknowledge our loved ones, our families, and the caregivers who provide love and support to the most severely disabled individuals who reside in Intermediate Care Facilities.
Please stay tuned.
Meanwhile...
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Disability Advocates Warn $400 Billion Community-Based Services Plan Could Get Chopped
By Michelle Diament, Disability Scoop, July 23, 2021
An ambitious Biden administration plan to invest $400 billion to transform the nation’s home and community-based services and get people with disabilities off waiting lists is in jeopardy, advocates say.
The proposal, which came as part of President Joe Biden’s American Jobs Plan in March, aims to bring relief to many people with disabilities who are waiting to access services while bolstering the workforce of direct support professionals.
Last month, Democrats in Congress introduced a bill called the Better Care Better Jobs Act, which is intended to serve as the legislative framework for the home and community-based services plan. The legislation 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. It also includes incentives for states to strengthen the direct care workforce.
Now Senate Democrats are working to make good on the plan. They’re currently piecing together the details of a $3.5 trillion reconciliation bill, which is expected to incorporate the Better Care Better Jobs Act.
But, with numerous competing priorities in the massive spending package, disability advocates say they’re alarmed by rumors that the amount allocated to Medicaid home and community-based services could be cut to $150 billion, less than half the $400 billion Biden called for.
A lower figure is simply inadequate to address the entrenched issues in the services system for people with developmental disabilities, said Nicole Jorwic, senior director of public policy at The Arc.
“I do think that home and community-based services funding will be in the package, but I have concerns that the level of funding won’t be enough to fund effective policy,” she said. “We know that in order to fundamentally solve these problems — to clear the waiting list and get the workforce over $15 per hour — that would cost more than the $400 billion.”
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Long-Term Care Leaders Call for Investments in ‘Infrastructure for Aging’
By Kimberly Bonvissuto, McKnight's Senior Living, July 22, 2021
As Congress and the administration negotiate the details of an infrastructure agreement that could top $1.2 trillion, organizations representing senior living and other long-term care providers are calling for investments in the country’s “infrastructure for aging.”
LeadingAge President and CEO Katie Smith Sloan on Tuesday called on Congress not to walk away from funding proposals such as a $400 billion investment in home- and community-based services through the Better Care BetterJobs Act, which is rumored to be in danger of being cut back.
“These investments are decades overdue,” Sloan said. “The country is rapidly growing older, and now is the time to meet the ever-increasing needs of millions of older Americans.”
LeadingAge joined the Leadership Council of Aging Organizations’ 66 other members — which include AMDA–The Society for Post-Acute and Long-Term Care Medicine, elder LGBT advocacy group SAGE and PHI — in calling on Congress to support HCBS; better wages, benefits and training for direct care workers; affordable senior housing programs; employment protection and workforce development; broadband services; and transportation options for older adults.
In a July 16 letter to Congress, Sloan, LCAO’s chair, said the “historic investment” in HCBS through the Better Care Better Jobs Act should increase access to such services across all states and populations, eliminate waiting lists, and make permanent the Money Follows the Person program and spousal impoverishment protections.
“There is no justifiable public policy reason to force Medicare enrollees into poverty to be able to access care at home and in the community that Medicare and and should cover for all enrollees,” Sloan wrote.
The LCAO also reiterated its support for the direct care workforce through better wages, benefits and training.
“Significant investments in the direct care workforce are critical to improving the quality of HCBS and ensuring that direct care jobs are high quality jobs with family sustaining wages and benefits,” Sloan said.
The American Health Care Association / National Center for Assisted Living on Wednesday called on lawmakers to allocate support for capital improvements at assisted living communities and nursing homes “so residents can receive the highest quality of care and additional protection against infectious diseases and other emergency events.”
AHCA / NCAL specifically is advocating for funding to allow long-term care providers to make improvements in indoor air quality via upgraded HVAC systems; technology, including expanding broadband access; emergency preparedness, including enhanced generator capacity, additional battery power sources and solar panels; and enhanced sanitization and monitoring through UVC lighting and wastewater monitoring.
“We must learn from this pandemic and other national emergencies,” AHCA / NCAL stated. “Congress must prioritize our seniors in the infrastructure package and help provide much needed funding so long-term care facilities can provide better care and be better prepared. Every resident deserves a modern, clean facility that will offer them safety and connectivity.”
Pointing to a recent survey of assisted living community and nursing home providers, AHCA / NCAL said that only one-quarter of providers said they are confident they will make it through to 2022 due to the financial strain caused by responding to the pandemic.
“Facilities are struggling just to make ends meet; they cannot afford to provide much-needed infrastructure improvements without additional help from lawmakers,” AHCA / NCAL said in a statement.
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Again,
We are only asking to be included in the movement to improve funding and quality management for people with Intellectual disabiliteis and the aging community. Our families, our loved ones, our DSPs, all deserved equal benefits from these bills.
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Guardianship News, Updated: |
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Note: Last week we reported on several members of Congress expressing interest in passing new laws on Guardianship Reform, after having seen so much interest in the media coverage of the Britney Spears case.
This week, Democratic Rep. Charlie Crist of Florida and Republican Rep. Nancy Mace of South Carolina have introduced the first of what will probably be several bills aimed at upending guardianship laws. While there are problems withing the guardianship and conservatorship system, there are also important guidelines aimed at protecting the most vulnerable. We hope that legislators will not rush to reform things they don't fully understand in an effort to appeal to voters.
We urge our members to know their rights as guardians of their loved ones with I/DD, and to protect those rights.
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Britney Spears Conservatorship Battle Spurs Bipartisan Bill Against Conservatorship Abuse
By Nancy Dillon, New York Daily News, July 20, 2021
Britney Spears’ anti-conservatorship crusade led two U.S. House lawmakers to unveil a new bipartisan bill Tuesday aimed at protecting people in legal guardianships.
Democratic Rep. Charlie Crist of Florida and Republican Rep. Nancy Mace of South Carolina introduced their new Freedom and Right to Emancipate from Exploitation Act at a virtual press conference, repeatedly invoking the pop star’s controversial case.
The proposed bill, dubbed the FREE Act, would offer an “escape hatch out of abusive guardianships” by allowing subjects to have their private guardian, called a conservator in some states, replaced with an independent public guardian without having to prove misconduct or abuse.
In the case of Spears, she’s asking a Los Angeles judge to remove her dad from his position as conservator of her $60 million estate, a position he’s been reluctant to give up despite public calls from his daughter to resign.
“Under the FREE Act, we would Free Britney along with the countless number of seniors and persons with disabilities being abused and exploited by the broken system,” Crist said in a statement.
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South Dakota Legislators Spar over Fate of State-Run Home for People with Intellectual Disabilities
By Christopher Vondracek, Grand Forks Herald, July 22, 2021
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A meeting of South Dakota legislators devolved into bickering Wednesday, July 21, over a state health facility in Redfield, S.D., that some conservative legislators want to ax.
Shawnie Rechtenbaugh, secretary for the Department of Human Services, addressed the committee overseeing state spending, following up on a visit some committee members made last month to the South Dakota Developmental Center in Redfield, where they saw first-hand the care patients receive. But lawmakers also posed questions about budgeting and efficiencies, given the campus' decline in residents.
The Redfield campus is a short-term residential care facility for persons with intellectual or developmental disabilities. But in recent years, it's come under the scrutiny of appropriators.
On Wednesday she ticked off a number of cost-cutting moves the campus has taken on, including selling land and buildings, centralizing services on the campus, and leaving vacant certain staffing. Rechtenbaugh noted the SDDC served 1,200 residents in the 1960s and around 80 today.
"The services we provide are a very specialized service for individuals who are not yet ready or net yet able to live in the community," Rechtenbaugh said.
Still, Rechtenbaugh's presentation didn't sate some legislators on the Republican-dominated committee who are looking for cost-savings. Co-chair Rep. Chris Karr, R-Sioux Falls, pressed Rechtenbaugh for imposing a "five-year-strategic plan" on the Department of Health's operations in Redfield.
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"To me, it seems like it'd be very appropriate to have something more concrete and strategic laid out on paper," Karr said.
Rechtenbaugh said that DHS has a strategic plan, and that a recent consultant's report provided SDDC internal working documents that she could summarize for the committee.
"The services we provide, we know there's a need for it," Rechtenbaugh said.
But some appropriators on the committee suggested they had no intention of thinking long-term about the Redfield facility.
"We just need to be honest with Redfield and tell them, 'We're closing this thing down with a certain number of years,'" said Rep. Steve Haugaard, R-Sioux Falls, suggesting the state pays "$300,000" per person cared for at the site.
Haugaard said the remaining residents at the facility could be moved to the Human Services Center in Yankton.
But his broadside was almost immediately rebuked by Sen. Brock Greenfield, R-Clark, whose district includes Redfield. Greenfield said lawmakers had "ambush[ed]" Rechtenbaugh and dismissed strategic changes happening in Redfield, where employees are, in his words, overworked and underpaid.
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South Carolina Commission on Disabilities and Special Needs to Improve Safety, Accountability at Care Facilities
By Kaitlyn Luna, WBTW-13 News, July 16, 2021
The South Carolina Commission on Disabilities and Special Needs unanimously voted Thursday to support the agency’s progressive plan to improve safety, accountability, and workplace training at the state’s five regional intermediate care facilities, commonly referred to as the DDSN Regional Centers.DDSN Regional Center Intermediate Care Facilities are operated by the state and provide
24-hour care, supervision, and treatment to the most fragile individuals served by DDSN.
The Regional Centers, located in Clinton, Columbia, Florence, Hartsville, and Summerville, are generally recommended only when all other appropriate home and community-based services aren’t an ideal fit for a family’s needs and circumstances.
Under the agreement, the LTCO will produce content for training videos that will be used by DDSN to better train direct care staff in the onboarding process and throughout the year. DDSN hopes that the training will help to eliminate abuse and neglect cases and improve the overall quality of care of all residents, especially those with increasing behavioral needs.
“The pandemic created extremely difficult staffing challenges in our ICFs and the stress on the direct support professional (DSP) workforce from high turnover, staffing shortages, and high overtime has been immense,” Constance Holloway, Esq., Interim State Director of DDSN, said. “As a result of increased data collection, monitoring and gathering input from supervisors and frontline workers, DDSN is developing a set of new initiatives and stronger guidance to enhance worker satisfaction and quality of life of those served in the state’s five regional intermediate care facilities.”
DDSN Commission Chair Stephanie Rawlinson and other Commissioners expressed their full support of initiatives to strengthen the regional center workforce and reinforce efforts to protect the health and safety of all residents.
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Connecticut - Volunteers Gather to Clean Up Southbury’s Crawford Hall
By Steve Bigham, Waterbury Republican-Amreican, July 22, 202
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One of the more visible buildings on the state-owned Southbury Training School campus off South Britain Road got a bit of a makeover last weekend.A group of volunteers gathered at Crawford Hall on Saturday and cleaned up its exterior, including the removal of a giant vine that had overtaken the building, which faces Route 172 in Southbury near the campus’ main entrance.
Southbury resident John Hirschauer organized the cleanup effort.
“It’s a building that the staff, residents, and the town of Southbury see every day when they drive by or through campus. We wanted them to know that we care about the place that they work and call home. We felt like cleaning up that building would be a small gesture to that effect,” said Hirschauer, who volunteers his time as part of the school’s Home and School Association, which advocates for and provides programming to the individuals with disabilities living there.
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Hirschauer said one of his group’s initiatives this year is to clean up the campus in preparation for upcoming visits from members of the state legislature, whose job it will be to determine what becomes of the facility, which first opened in 1940.
Hirschauer said he hopes legislators who visit see the level of need experienced by residents there and the care they receive. He said the need remains for the state to provide that kind of intensive, specialized setting.
“We are eager to show legislators that STS is ‘hone” to its residents and a place with both a long history and a lot of potential,” Hirschauer said.
The training school is operated by the state’s Department of Developmental Services. It is listed on the National Registry of Historic Places.
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Click on blue link to view information about the bill
VOR OPPOSES:
H.R.4131 & S.2210 - The Better Care Better Jobs Act - While this bill would greatly increase the amount of federal funding for people with I/DD, it only supports those in waiver programs receiving Home and Community Based Services. It unjustly discriminates against those who have chosen Intermediate Care Facilities as the necessary and proper form of residential treatment. By giving a 10% increase n federal matching funds only to HCBS clients, and providing training and increased pay only to direct support professionals working in HCBS facilities, the act deliberately favors one form of treatment over another, one ideology over another, and one set of people with I/DD over another.
H.R. 603 & S. 53 - The Raise the Wage Act - These bills are aimed at raising the minimum wage, but they also have provisions to phase out and ultimately eliminate vocational centers and 14 (c) wage certificates over the next six years and to immediately stop the issuing of any new certificates. VOR believes the issue of employment options for individuals with intellectual disabilities should not be buried in a bill for raising the federal minimum wage. Both issues deserve clean, stand-alone bills.
H.R.1880 - To amend the Deficit Reduction Act of 2005 to make permanent the Money Follows the Person Rebalancing Demonstration.
H.R. 2383 - The Transformation to Competitive Integrated Employment Act - this bill purports to assist employers providing employment under special certificates issued under section 14(c) of the Fair Labor Standards Act of 1938 in transforming their business and program models to models that support individuals with disabilities through competitive integrated employment, to phase out the use of such special certificates. We feel that, if enacted, tens of thousands of people with I/DD and autism will still be forced out of opportunities they currently, needlessly, and left without viable alternatives to occupy their time or address their needs and their abilities.
VOR SUPPORTS:
VOR takes no position on whether or not the minimum wage should be raised to $15 per hour, or some other amount. We do, however, oppose any bills (see H.R. 603 & S. 53, above) that would remove vocational centers and 14(c) wage certificates.
For those who do support raising the minimum wage, there are currently two "clean" bills in the House that would raise the minimum wage without taking opportunities to work in a therapeutic environment through the use of 14(c) certificates. Those bills are H.R. 112, from Rep. Al Green (D-TX) and H.R. 325, from Rep. Steve Cohen (D-TN)
Additionally, Senator Tom Cotton (R-AR) has introduced a bill in the Senate, S 478, that would raise the minimum wage to $10 over a period of three years for some workers, without eliminating 14(c) wage certificates. The bill would also require the Department of Homeland Security to implement electronic verification to verify that prospective employees are legally authorized to work in the U.S.
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Direct Support Professionals: |
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VOR ❤️s OUR DIRECT SUPPORT PROFESSIONALS!
Our loved ones' caregivers are essential to their health, safety, and happiness.
In appreciation of their good work and kind hearts, VOR offers free digital memberships to any DSP who would like to join.
We encourage our members to speak with their loved ones' caregivers to extend this offer of our gratitude.
If you are a Direct Support Professional interested in receiving our newsletter and e-content, please write us at
with your name, email address, and the name of the facility at which you work. Please include the name of the VOR member who told you of this offer.
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What's Happening In Your Community?
Is there an issue in your loved one's home that you need help with?
Do you have information or a news story you would like to share?
Is there legislation in your state house that needs attention?
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836 South Arlington Heights Road #351 Elk Grove Village, IL 60007
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