A few months ago, VOR's Harris Capps encountered a newly formed group of advocates named the Coalition for the Preservation of 14(c). Since Harris' son works in a vocational center under a 14(c) certificate, the continued attacks on the 14(c) programs has been one of his great concerns in recent years. https://preserve14c.org

VOR has been fighting preserve 14(c) programs for several years. While we haven't been alone in this struggle, it has been hard to gain much traction in our attempts to inform legislators about the need to protect this program. The Obama, Trump, and Biden administrations have all taken actoin against 14(c) certificiate programs. The Administration for Community Living, Department of Labor, key members of the House and Senate, and several national I/DD advocacy groups have been determined to shutter these programs.

In just a few month's time, the Coalition for the Preservation of 14(c) has set quite an example for advocates everywhere. Working with the help of the legal team at K L Gates, they have managed to schedule over 40 meetings with congressional office staff in the past few weeks. VOR's Hugo Dwyer, Gayle Gerdes, and others have taken part in abot 15 of those meetings, with more scheduled in the weeks ahead. We are proud of our partnership with the Coalition and are grateful for the chance to help preserve this program that provides employment opportunities for individuals with I/DD.

By Shawn Hardy, Echo Pilot, February 21, 2022

Jack Shoemaker of Greencastle loves to work. It's like pulling teeth for his parents, Carolyn and Barry Shoemaker, to convince him to go on vacation.

Michelle Lane is breathing a temporary sigh of relief that with the Build Back Better Act stalled, employment through Occupational Services Inc. will continue — at least for now — for Jack and dozens of other local residents with intellectual and developmental disabilities.

Based in Chambersburg, the non-profit OSI was founded in 1957 and is marking its 65th year helping "individuals with disabilities or other barriers to employment to lead more productive and meaningful lives by maximizing their abilities to achieve their highest potential through vocational programs and employment services," according to its website.

Lane, OSI's executive director, is part of the nationwide Coalition for the Preservation of 14C, which is amping up efforts to protect the future of commensurate wage work center programs. At sites like OSI, some employees are paid a "piece rate" rather than an hourly wage.

A small section of the 2,000-plus page Bill Back Better Act is aimed at moving away from organizations certified by section 14(c) of the Fair Labor Standards Act under which people with disabilities may earn less than minimum wage.

The most recent challenge has been tied to efforts to raise the minimum wage, but this was not the first time 14(c)s have been in the bull's eye and some bad seeds can taint the whole bunch, according to Lane.

"Those kind of stories hit the media," she said, citing one boarding home where the residents were basically doing forced labor.

The Coalition for the Preservation of 14C is working to educate lawmakers on why their organizations are important and that they do not take advantage of people with disabilities, who are receiving pay in line with what they do on the job.

"We really think our congresspeople don't understand," Lane said.

Workplaces like OSI may be the only opportunities for meaningful employment for some 100,000 individuals with disabilities across the country "who rely on commensurate wage work centers for their employment with extensive accommodations and supports," according to a position paper the coalition distributed to lawmakers in January.

The paper highlights the value of 14(c) organizations for people with disabilities and their communities, outlines strict federal and state guidelines they must meet and says 14(c) should not be tied to efforts to raise the minimum wage. It is not financially feasible for some disabled workers to be paid minimum wage because that is higher than their level of productivity and they have additional needs, such as job coaching, according to the coalition.

"These providers offer a safe environment, with professional staffing, to allow individuals to thrive in an employment setting, work with their peers and others, and receive a paycheck," the paper says. "Ultimately, Congress should take action to ensure that the most vulnerable members of the workforce, including those with significant intellectual and developmental disabilities, are not abandoned by an ill-advised wholesale elimination of the 14(c) program."

By Audrey Dutton, Idaho Capital Sun, February 21, 2022

As the delta variant crashed down on Idaho last fall, a hospital staffing shortage turned into a staffing crisis — and gave way to an expensive swap.

Hospitals would lose nurses to lucrative, short-term gigs with staffing agencies that offered upwards of $4,600 to $8,000 per week, sometimes with housing allowance on top of the wages. And every time a nurse left, their job had to be filled. So, hospitals turned to those same staffing agencies to fill job openings, and the agencies charged the hospitals a premium on top of the worker’s own wages and benefits.

The same thing has happened in all health care facilities, according to the representative of an industry group that wants to set some boundaries on what staffing agencies can charge.

A bill introduced on Feb. 11 and referred to the Senate Commerce and Human Resources Committee would add temporary health care staffing as a category under Idaho’s consumer protection law that forbids price gouging — charging “an exorbitant or excessive increased price” during an emergency.

Other states, industry groups and members of Congress have mulled similar bills and sought inquiries into the high rates charged by health care staffing agencies during the pandemic.

For long-term care facilities, those that accept patients with Medicaid health insurance cannot afford to pay higher wages, he said.

Just as in hospitals, jobs in nursing homes, assisted living or group homes can be physically and emotionally taxing. Health care staff have spoken of feeling underappreciated and overworked during the pandemic, often because the staffing shortages have forced them to take on more work.

When offered a higher wage by a staffing agency, some of them jump at the opportunity to at least make more money — or, in free-market terms, getting paid what they are worth — and their departure worsens the staffing shortages.

“It’s a downward spiral,” said Vande Merwe, describing the phenomenon that has become well-known in the pandemic. “You kind of have to use agency (staff) because there’s no other choice. … One hospital told me the nurse is being paid $75 an hour, but the rate (charged) to the hospital is $250 an hour.”

By Robert Preidt, KOAM News Now February 21, 2022

Researchers have discovered differences between the brains of girls and boys with autism that they say may improve diagnosis of the developmental disorder in girls.“We detected significant differences between the brains of boys and girls with autism, and obtained individualized predictions of clinical symptoms in girls,” said study senior author Vinod Menon, a professor of psychiatry and behavioral science at Stanford University.

“We know that camouflaging of symptoms is a major challenge in the diagnosis of autism in girls, resulting in diagnostic and treatment delays,” Menon said in a university news release.

In the study, he and his university colleagues used artificial intelligence to analyze MRI brain scans from 637 boys and 136 girls with autism worldwide.

Girls had different patterns of connectivity from the boys in several brain centers, including motor, language and visuospatial attention systems. The largest differences between the sexes were in a group of motor areas. Among girls, the differences in motor centers were linked to the severity of their motor symptoms. Girls whose brain patterns were most similar to boys tended to have the most significant motor symptoms of autism.

The researchers also identified language areas that differed between boys and girls, and noted that previous studies have found greater language impairments in boys with autism than in girls with autism.

The brain differences between girls and boys with autism were not seen in youngsters without the condition.

Autism is diagnosed in four times as many boys as girls, and most autism research has focused on males, the researchers noted.

The study was published online Feb. 15 in the British Journal of Psychiatry.

By Lindsey Shapiro PhD, Prader-Willi Syndrome News, February 22, 2022

A case of acute kidney injury in a woman with Prader-Willi syndrome (PWS) and intellectual disability was attributed in a recent report to the use of multiple medications.

The case shed lights on how vulnerable people with an intellectual disability are to being over-medicated, with the complications that raises. Its researchers noted that consistent and comprehensive care with an established primary care doctor can help to prevent such incidents.

“Our case illustrates that patients with [intellectual disability] are at increased risk for [medication]-related adverse outcomes, which are preventable medical errors,” the team wrote. “Continuity of care by an established primary care doctor is critical in managing patients with [intellectual disability].”

The report, “Polypharmacy in a Patient With Intellectual and Developmental Disabilities,” was published in the Cureus Journal of Medical Science.

PWS is usually accompanied by a wide range of coexisting conditions, including obesity, thyroid problems, high blood pressure, and diabetes. Most PWS patients also have intellectual and developmental disabilities (IDD).

Chronic conditions associated with PWS are often managed with long-term use of several medications, which can lead to adverse reactions including kidney injury. Patients with IDD usually rely on doctors and caregivers to manage their medications, and on average receive more medications and have more side effects than those without IDD.

“Clear communication between healthcare providers and caregivers is vital in orchestrating appropriate healthcare delivery to adults with IDD. Additionally, prescribers, pharmacists, and caregivers should be specifically trained to care for patients with IDD,” researchers concluded.

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.

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.

VOR OPPOSES:

S. 3417 - The Latonya Reeves Freedom Act of 2021 - This bill may be seen as the offspring of the Disability Integration Act from the 116th Congress. It misrepresents Olmstead, and contains provisions that would be harmful to the existence of ICFs, including a section that would promote lawsuits against larger congregate care facilities.

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.

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