August 19, 2022

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

Preserving 14C Programs:

A series of articles appeared recently in the Lancaster Patriot (Lancaster County, PA) defending vocational centers and 14(c) programs. Working with staff of the Lighthouse and our friends at the Coalition of the Preservation of Employment Choice. The articles give a comprehensive picture of the benefits of 14(c) the threat to its existence, and the likely outcomes of eliminating these unique opportunities for people with I/DD.

Disabled Individuals Could Lose Employment If 14C Certification Is Phased Out

By Diane Boone and the Lancaster Patriot Staff, July 30 2022

According to data from the U.S. Census Bureau, there are more than 40.7 million people living with disabilities throughout the nation — a number that is expected to continue increasing over time. Many of these disabilities do not prevent individuals from participating in the competitive workforce that the U.S. economy runs on, but there are physical and intellectual disabilities that make employment a herculean challenge for others. According to disability employment statistics published by the U.S. Department of Labor, in 2021 the labor force participation rate of individuals without disabilities was 67.1%, compared to a mere 21.3% of individuals with disabilities. Of that 21.3%, a significant number of those with more pronounced disabilities work for commensurate wages in positions, programs and facilities made possible through Section 14C of the federal Fair Labor Standards Act — but 14C has come under fire in recent years and could be wiped from the law.


The Benefits 14C Provides to the Disabled Community

By Diane Boone and the Lancaster Patriot Staff, August 4, 2022

Going to work has often been viewed as mere drudgery, but after pandemic lockdowns forced so many people to stay at home because the government deemed their work “nonessential,” our society has developed a new appreciation for having a job to go to. A job can give people structure in their lives, opportunities to leave the house and see other people, a way to provide a valuable service to their community, and a way to develop skills over time.

Historically, many individuals who had physical or intellectual disabilities were unable to join the workforce, but Section 14C of the Fair Labor Standards Act created more opportunities for these individuals to enjoy the benefits of having a regular job. 14C does this by allowing employers to gain certification so that their employees can earn wages based on the amount of work they accomplish rather than being held to standards that would earn the usual minimum wage. This means more employers and organizations can provide paying jobs to individuals who are constrained in the amount of time they can work in a week, the speed at which they can do the work required of them, and the overall complexity of tasks they can handle.

However, the nationwide Employment First movement seeks to eliminate Section 14C and the type of work it allows. Proponents of Employment First policies and legislation contend that all people with disabilities should be employed out in the community — not in sheltered workshops, which the movement terms “segregated” — and that everyone should be earning no less than minimum wage no matter what.

Proponents of 14C, on the other hand, do not accept the idea that everyone can work in a competitive work environment or that everyone should be forced to participate in such a setting if they wish to work. The benefits of sheltered workshops outweigh any downsides for many individuals, since the facilities are designed specifically to serve people with physical or intellectual disabilities. Facility-based work programs provide ongoing training, support from specially trained staff, customized workstations, visual aids, accommodations for issues like sensory sensitivities, assistance with things like personal care and behavior management, and a wide variety of other supports. For people with significant disabilities, facility-based work could be their only opportunity for employment, since the environment accommodates their needs to a degree that a community-based workplace simply cannot achieve.


Defending 14C From Eradication

By Diane Boone and the Lancaster Patriot Staff, August 10, 2022

Over the past decade, the Employment First movement has made substantial progress in the country. While it encourages the participation of more people with disabilities in the competitive workforce, it also curtails too many opportunities for individuals with more severe disabilities. In 1986, the Fair Labor Standards Act was amended to include Section 14C, which acknowledges that some individuals cannot keep pace in fully integrated employment and need other accommodations. Under Section 14C, employers and organizations that meet strict standards are granted the ability to pay commensurate wages according to an employee’s productivity level, an arrangement that benefits employer and employee alike. Now, 14C-certified organizations are struggling to survive as people push for Employment First laws and policies that would eradicate jobs and programs that fall outside of competitive integrated employment.

Whether 14C will remain at all is up to Congress, since 14C is part of federal law, even though it is carried out at the state level. Organizations like the Association of People Supporting Employment First and other lobbyists are pushing the federal government to get rid of 14C, and legislation has been put forth to this end by those like Pennsylvania’s U.S. Senator Bob Casey, a strong proponent of competitive integrated employment and the elimination of commensurate or subminimum wages. An Employment First mindset is setting in: An increasing number of documents and policies from the federal government as well as from state governments are favoring community-based programs and undermining 14C and facility-based programs — even facilities that pay participants minimum wage or more.

To show lawmakers the value of 14C and the benefits it provides for people with disabilities, people from around the country who are seeking to preserve facility-based work programs and commensurate wage work founded the Coalition for the Preservation of 14C, now known as Coalition for the Preservation of Employment Choice. The organization supports “the elimination of barriers to employment” for people with disabilities, its website states, and the coalition’s mission is to “advocate, educate, and promote efforts that provide individuals with significant disabilities a voice for their personal vocational and employment choice.” The organization is working to inform both politicians and the public about the need to continue to provide workplace settings that are safe, supportive and positive for individuals with disabilities. The coalition has conducted meetings with more than 70 lawmakers so far to educate them on how eliminating 14C would drastically reduce the employment opportunities available to the disabled community and would prevent countless individuals from pursuing work that aligns with their goals, preferences, skill levels and needs.

Tens of thousands of individuals who are currently employed through 14C certificates rely on work centers with extensive accommodations and supports, and these individuals are likely to face significant hardship should such work opportunities be eliminated. Since the availability of 14C programs in no way prevents individuals with disabilities from trying to find employment in the competitive integrated workforce, the call to eradicate 14C and facility-based programs is misplaced.


Direct Support Professionals:

New York - Caregivers for People with Disabilities Say Classification Change Would Solve Wage, Staffing Issues

By James O’Donnell and Jacqueline Neber, Crain's Business News via Top News, Australia, August 12, 2022

Direct-support professionals who help people with disabilities with everything from getting out of bed to finding a job said a flaw in the way they’re classified and counted by the government is keeping wages down and perpetuating the caregiver shortage.

More than 120,000 New Yorkers with intellectual or developmental disabilities receive assistance from DSPs, but the workforce is disappearing. It has undergone hiring and retention issues for decades, but the problems now are reaching a crescendo. The turnover rate for New York DSPs is greater than 36%, and more than 17% of full-time positions are vacant statewide.

Wages are a major factor. Caregivers in New York City earn $16.40 per hour on average. Because the wages are paid through Medicaid reimbursements to providers, advocates said, those low wages are a consequence of how the workforce is measured by statisticians at the federal Bureau of Labor Statistics.

The bureau classifies all the nation’s workers into 867 categories based on what they do. But there’s no category specifically for DSPs, who are instead categorized as either home health aides or personal care assistants.

Advocates say that misrepresents their job and distorts what comparable wages are for the profession.

Carol Britton Laws, associate clinical professor at the University of Georgia’s Institute on Human Development and Disability, said that without a unique code for DSPs, states can’t set appropriate reimbursement rates. Lawmakers and agencies set the rates for DSPs based on the skill set required to do the job, but without a dedicated code, those skill sets aren’t accurate, Laws said.

“It becomes very difficult for provider organizations,” she said, “to be able to pay [DSPs] wages equivalent with the type of work that they’re doing.”

The federal government, which last changed its codes in 2018, plans to receive public comments in 2024. Before then, a growing coalition of caregivers and advocates is campaigning for the creation of a new code as a way to raise wages and ease the workforce shortage that’s affecting more than 7 million Americans with disabilities.

Advocates say DSPs’ skill sets are distinct from other related professionals because of the specialization of the population as well as specific training they go through to be qualified.

Read the full article here

South Carolina - DDSN Unveils a New Career Path for Direct Support Professionals

Sponsored Content from PJ@SCDDSN,  August 17, 20922

The South Carolina Department of Disabilities and Special Needs (DDSN) is pleased to announce an exciting new opportunity for those interested in a meaningful career serving the State of South Carolina by providing direct support in the treatment, care, and training of individuals with disabilities and special needs. This new Direct Support Professional Career Path Program provides a multi-tiered career progression that allows the opportunity for on-the-job training and advancement to supervisory positions while earning a competitive salary and full state benefits.

Those interested in this exciting new career opportunity, need only a High School Diploma or equivalent, to earn an annual salary of $31,200 and start work as a Direct Support Professional I. Once the individual has three years of experience working with our target population, they will qualify to be a Direct Support Professional II, receive additional compensation, and have opportunities to serve as a team lead. Candidates who already possess three or more years of experience working with our target population can immediately apply to a Direct Support Professional II position. In order to increase career progression statewide, DDSN has also tripled the available Direct Support Professional III positions who will serve as supervisors of the Direct Support Professional I and II positions and receive higher compensation. The Direct Support Professional I, II, and III positions are also overtime-eligible positions.

DDSN also has opportunities for advancement to a Direct Support Manager, who serves as supervisor of the Direct Support Professional III positions and receives higher compensation. In addition to the compensation, the state of South Carolina offers eligible employees generous benefits, including health, dental, vision, long-term disability, and life insurance; retirement and savings plan options; 15 days annual (vacation) leave per year, 15 days sick leave per year, and 13 paid holidays per year. 

Read the full press release here

Global Health:

The Forgotten Virus: Zika Families and Researchers Struggle for Support

By Stephanie Nolen, The New York Times, August 16, 2022

A procession of mothers pushed children in bulky wheelchairs down a long corridor at a health center in this northeastern Brazilian city, passing patients who glanced at the children, looked away, then looked back, quickly and uneasily.

The children were smartly turned out in Disney T-shirts, striped socks, plastic sandals. Girls had ponytails tied with big bows; many wore brightly colored glasses. And all were profoundly disabled, their limbs rigid, their mouths slack, many with foreheads that sloped sharply back above their dark eyes.

Most Brazilians know as soon as they see them: These are Zika babies, whose mothers were infected with the virus while pregnant during a virulent outbreak of the mosquito-borne illness in 2015 and 2016. The chief signifier at birth was microcephaly, unusually small heads that hinted at the devastating brain damage the virus caused while they were still in utero.

Seven years later, they are now children, many of them nearly as big as their mothers. The sight of them visibly startles people who have not thought about them for years. After the Zika epidemic did not turn into a pandemic that swept the globe, Brazil and the rest of the world moved on.


State News:

Pennsylvania - White Haven and Polk Families Seek Federal Injunction before Nov. 30 Closing

By Kent Jackson, Citizens Voice, August 17, 2022

A federal court has been asked to temporarily block transfers of people living in state centers at White Haven and Polk.

Relatives and guardians of residents said in a motion on Tuesday that the state is trying to close the centers by Nov. 30 before a lawsuit that they filed to keep the centers open comes to trial.

Three years ago, the state gave residents a choice of moving to a private facility such as a group home or either of two other state centers in Ebensburg, Cambria County, and Selinsgrove, Snyder County.

“Recently,” the motion states, “residents’ guardians have been advised that they must choose either Ebensburg Center or Selinsgrove Center, or one of these will be chosen for them, and that they will moved within two (2) to three (3) months, or even sooner, with or without their consent.”

Relatives and guardians said closing the centers on Nov. 30 violates a mediation agreement and the rights of guardians. Closing centers also puts residents in danger because of their physical and mental conditions and because there is an outbreak of COVID-19 at Selinsgrove.

Attorney Thomas York filed the motion for a temporary restraining order and preliminary injunction in U.S. District Court for the Middle District of Pennsylvania, the same court where he filed the lawsuit seeking to keep the centers open two years ago.

In the motion, York asks the court not to let the state “run out the clock” by delaying the lawsuit until the centers close in White Haven and Polk, Venango County.


Maine - Opinion: Even with a Huge Budget Surplus, Maine Keeps Leaving People with Disabilities Behind  

By Alan Cobo-Lewis, Bangor Daily News, August 15, 2022

Three recent developments in Maine highlight budget and policy choices that leave Mainers with disabilities behind. It didn’t have to be this way. But we can make it right.

First, Sweetser announced the closure of Bangor- and Belfast-area group homes for adults with disabilities, putting 45 people at risk of losing their current homes — and at risk of being moved involuntarily to some location far from family and community.

This was driven largely by the inability to compete in today’s labor market for direct-support professionals who can find higher-paying jobs in retail or other sectors. This is because, though the state agreed to raise reimbursement rates for community support agencies to allow them to pay 125 percent of minimum wage (a proposal initially opposed by the Mills administration), that merely implemented a pre-pandemic recommendation that was never adequate to compete in the COVID-affected labor market.

Next, the U.S. Department of Justice issued findings that Maine is violating the Americans with Disabilities Act by stranding children with disabilities on waitlists and putting them at risk of unnecessary institutionalization, contrary to the U.S. Supreme Court’s 1999 Olmstead decision. While the findings pertained specifically to the children’s system, many of them could also apply to the adult system.

Stranding people on waitlists — sometimes for years on end — is unacceptable. Yet, eight years after settling a lawsuit designed to clear wait lists, Maine has 2,355 adults with disabilities on waitlists for services for autism, intellectual disability, brain injury, and other related conditions — a number that will continue growing under the current state budget — and 1,621 children on waitlists for rehabilitative community services, specialized rehabilitative community services, or home-based community treatment. 

Finally, it was trumpeted by the governor’s office and by legislative leadership that Maine closed out the 2022 fiscal year with a nearly $600 million surplus. This means there’s plenty of money to address all of the above issues.

It’s not a matter of money. It’s a matter of choosing not to address a crisis that existed before the pandemic and that has gotten worse and worse and worse. 

Read the full opinion piece here

VOR Bill Watch:
[Please click on blue link to view information about the bill]


Modifying the Build Back Better Act to include language to provide funding for Intermediate Care Facilities in parity with increased funding for HCBS services, and to remove any provisions that would phase out or eliminate 14(c) wage certificate programs.

H.R. 4779 & S. 1437 - Recognizing the Role of Direct Support Professionals Act - To require the Office of Management and Budget to revise the Standard Occupational Classification system to establish a separate code for direct support professionals, and for other purposes.

S. 4102 - SSI Savings Penalty Elimination Act - To amend title XVI of the Social Security Act to update the resource limit for supplemental security income eligibility.

H.R. 3733 - Essential Caregivers Act of 2021 - To amend titles XVIII and XIX of the Social Security Act to require skilled nursing facilities, nursing facilities, intermediate care facilities for the intellectually disabled, and inpatient rehabilitation facilities to permit essential caregivers access during any public health emergency under the Medicare and Medicaid programs.

H.R.6075 - The HEADs UP Act - To amend the Public Health Service Act to expand and improve health care services by health centers and the National Health Service Corps for individuals with a developmental disability as a Medically Underserved Population (MUP).

H.R.4761 - A bill to amend the Rehabilitation Act of 1973 to ensure workplace choice and opportunity for young adults with disabilities.

H.R.4762 - A Bill to amend the Rehabilitation Act of 1973 to clarify the definition of competitive integrated employment.


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 & S. 3238 - 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 these 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.

H.R.4131 & S.2210 - The Better Care Better Jobs Act - To be clear, we don't oppose this bill. We object to the fact that it excludes the most vulnerable members of the I/DD population.

While the Better Care Better Jobs Act 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.
Help Us Help:

Families of Individuals with

Severe/Profound I/DD and Autism

Need a Voice in Washington, D.C.

For Four Decades, VOR Has Been That Voice

Please help us to continue to speak truth to power about the need for a diverse range of services, increased funding, and a full continuum of care to meet the needs of all people with I/DD and Autism.

This year, we have engaged in over eighty meetings with Congressional Staff. Together, we have advised on bills to protect Intermediate Care Facilities, to preserve 14(c) opportunities for individuals with I/DD, and to increase pay, training, and benefits for direct support professionals to alleviate the DSP crisis.

We have contacted attorneys from the Department of Justice’ Civil Rights Division concerning increased mortality rates among people with I/DD in wake of the closing of state operated intermediate care facilities in Virginia. We have met by Zoom with the same DOJ attorneys concerning their current action in to move people out of ICFs in Iowa. We recently testified before the President’s Committee on People with Intellectual Disabilities, and we have written in support of extending a program to help family caregivers in Oregon. Currently, we are drafting a letter in response to the platform submitted by the Republican members of the House Energy and Commerce Committee.

In order to have such a presence in D.C., we have had to change with the times. Covid made in-person meetings next to impossible. We have had to adapt to holding virtual meetings on Zoom. In order to compete with larger, better-funded organizations, we have had to hire the lobbying firm of Health Policy Source to advise us on how best to approach the powers that be and to facilitate our access to congressional staff. This has cost us, but we feel this has been money well spent. Now, we are asking you to help support us in this effort.

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