August 16, 2019
VOR Weekly News Update 
VOR is a national organization that advocates for high quality care and human rights for people with intellectual and developmental disabilities
VOR promises to empower you to make and protect quality of life choices for individuals with developmental disabilities

Same Stories, Different Day

Our two lead stories follow old patterns. A state intends to close down its intermediate are facilities (ICFs), and a major government agency is shown to have failed its mandate to provide high level care and accountability in overseeing waiver settings.

Pennsylvania Governor Tom Wolf has declared his intention to close two of the state's four remaining ICFs. The Polk center in Vanango County currently serves 194 residents. The White Haven center in Luzerne County serves 112 people. Both facilities have available beds that could have been filled to take people with severe intellectual disabilities, severe autism, and aggressive or self-injurious behaviors off of the waiting lists. Filling the beds at the centers would lower cost of care at the facilities by increasing the economy of scale of providing services.

Proponents of closing ICFs continue to claim, falsely, that equivalent services exist in the community (HCBS waiver services) and that ICFs are more expensive. But the services are not equivalent. ICFs provide 24/7 nursing staff, doctors and psychiatrists on campus, higher staff ratios and better trained, more experienced staff. ICFs offer active treatment, while waiver settings do not. And ICFs are subject to higher standards of incident reporting for abuse and neglect than are waiver settings. Moreover, ICFs actually meet the standards required, while waiver settings historically fail to report up to 99% of the incidents that occur within the group homes. (Click here to read the January, 2018 Joint Report from the Inspector General of HHS, the Administration for Community Living, and the Office of Civil Rights a HHS)


Speaking of the Administration for Community Living , they made the news again this week. It seems the agency failed to conduct its required oversight of independent living programs for the last five years.


Didn't they say something in January of 2018 about how they were going to improve reporting and accountability in waiver settings? (Click here to read the January, 2018 Joint Report from the Inspector General of HHS, the Administration for Community Living, and the Office of Civil Rights a HHS)
Pennsylvania to Close Two of its Four Residential Centers for People with Intellectual, Developmental Disabilities
By Kate Giammarise, Pittsburgh Post-Gazette via Philadelphia Inquirer, August 14, 2019
The state Department of Human Services will close two of four remaining state centers for people with intellectual and developmental disabilities, officials said Wednesday.

The closure of the Polk State Center in Venango County and White Haven State Center in Luzerne County will take about three years.

“The closures reflect the Wolf Administration’s work to serve more people in the community, reduce reliance on institutional care, and improve access to home- and community-based services so every Pennsylvanian can live an everyday life,” Human Services Secretary Teresa Miller said in a statement.

The move was praised by disability advocacy groups, but was decried by some family members whose loved ones live in the institutions, as well as local elected officials and union leaders representing center employees, who vowed to fight the closure.
Sen. Scott Hutchinson (R., Venango), whose district includes Polk, said the center had previously been threatened with closure in the 1990s. He said he would fight the decision.

The center "provides a very high quality and very necessary services to many families," he said.

“This will create great angst and concern for this vulnerable population and those employees who serve them,” said state Sen. Lisa Baker (R., Luzerne), in a statement. “Due to their location, there will be questions about the economic consequences as well as about the assurances of equivalent care being available within the community, as most residents are classified profoundly disabled and in need of skilled care.

The system of community-based care also has its challenges — in particular, a shortage of qualified workers.

President of Polk Center Association of Parents, Friends and Family Lashes Out at PA's Decision to Close Center
By Chris Rosetti, Explore Clarion, August 16. 2019
The president of the Polk Center Association of Parents, Friends and Family is displeased at Pennsylvania’s decision to close the Polk State Center within three years.“This is the wrong decision on the wrong day for the wrong reasons,” Irene McCabe, whose sister resides at the Polk State Center, told

“There is nothing about this decision that is right. It’s insulting, rude, and ignorant. These people (who made the decision) are supposed to be skilled at relationships and communication and foreseeing what the problem is and have a channel for a solution. They put the announcement out too soon. I don’t know why they felt they had to do it that quick. They weren’t ready. Everybody knows it doesn’t make sense.”

McCabe, who spent time working in the Commonwealth government, believes the fault in the way the decision was made and how it was announced lies with Pennsylvania Department of Human Services (DHS) Secretary Teresa Miller.
“Governor (Tom) Wolf brought her in from Kansas where she was the Insurance Commissioner,” McCabe said. “He brought her in to run the insurance department (at first). My read on her is she is so comfortable around numbers and less comfortable about people.”
“She talked about this being a great new day for Pennsylvania,” McCabe said. “Laying off hundreds of people and putting little kids in the road to be run over by cars – that is how I liken this (is a great day)? If you put the residents of Polk in the community, it’s like putting little kids in the road to be run over by cars. It’s not wanted and it’s not desired and it’s not necessary. People who know, know that, but choose to ignore it. There is a big, big, big national movement saying the closing of all these centers is wrong.”

McCabe said the unintended consequence of closing centers like Polk and moving its residents into group homes that are run by the private sector are staggering.

“We have states where they have moved too fast to shutdown centers,” McCabe said. “In George, they lost 500 kids. These (residents) are fragile. They have digestive systems that are fragile. They are people whose whole body doesn’t function well. They need access 24-7 to doctors and round the clock nurses. They are prone to choking.”

State Plans Closure of White Haven Center
By Chelsea Strub, WNEP-16 TV, August 14, 2019
There are mixed feelings after the Pennsylvania Department of Human Services announced its plan to close White Haven Center in Luzerne County. The center provides full-time care for people with intellectual and developmental disabilities.While some state leaders and advocacy groups are celebrating the news, our local lawmakers and families who depend on the facility are devastated.

Tom Kashatus of Glen Lyon says he's worried. For close to 40 years, his daughter has lived at White Haven Center in Luzerne County.

The place is home to more than 100 individuals with developmental and intellectual disabilities.
On Wednesday, the Department of Human Services announced it plans to close the facility, and the fate of those who depend on it is what worries Kashatus the most.

"Especially the people that have no family. And there's people up there that have had no family contact for years," Kashatus said.
State leaders in Harrisburg say closing White Haven Center and Polk State Center in northwestern Pennsylvania by 2022 is a good thing. Local lawmakers say the closure could be catastrophic.

"We're essentially kicking these people out of sometimes the only home they've ever known, but then it's concern and compassion for not only the residents but their families and the employees. I also have a great concern about the White Haven community as a whole. I mean there's over 400 employees at the White Haven Center that support all of the small businesses in the region, so this is going to have a dramatic impact on northeastern Pennsylvania," said Rep. Gerald Mullery, (D) 119 th District.

AFSCME Council 13 Opposes DHS Decision to Close Two State Centers

By William Kauffman, August 14, 2019

The Pennsylvania Department of Human Services (DHS) has announced plans to close Polk State Center in Venango County and White Haven State Center in Luzerne County over the course of three years.

These facilities provide 24-hour supported living, medical care and developmental activities, to people with intellectual disabilities. This move would not only affect the lives of the people who live in these centers, but it would affect the hundreds of workers who serve the residents on a constant basis.
Many of those workers are represented by AFSCME Local 1050 (Polk) and AFSCME Local 2334 (White Haven), as well as by other unions including SEIU. AFSCME Council 13 strongly opposes the decision to close these facilities.

“While we are waiting to learn more details about how exactly this move would affect the employees of Polk and White Haven, we do not agree with this decision and will do everything in our power to fight it and assist the workers in any way possible,” AFSCME Council 13 Executive Director David Fillman said.
Council 13 represents 626 employees at Polk and 337 employees at White Haven. The work they do maintains a high level of quality and positively impacts the lives of the residents every single day.
Upon learning of the news, Polk and White Haven workers felt blindsided, saddened and deeply concerned about the well-being of their residents.

“I think they could have handled this a lot differently. We should have all been involved in this. Families should have been involved. A lot of the individuals we have here have lived their entire lives here. They don’t know anything other than Polk Center. That’s going to be detrimental to them,” AFSCME Local 1050 (Polk Center) President Tammy Luce said.

President of AFSCME Local 2334 (White Haven) Bill Hill expressed disappointment with how DHS Secretary Teresa Miller framed the closure of these facilities and the assertion that “community-based settings honor the inherent value of every person and empower individuals to choose the direction of their own lives.”

“I don’t believe a lot of the residents would survive the change into a so-called ‘community-based setting.’ A lot of them are very fragile. If not for them being in the state facility, they wouldn’t have the fulfilling lives that they do. They are better served living in the facility. And I’m tired of everybody saying put them in the community when we are a part of the community already,” Hill said. 

The Administration for Community Living (ACL):
Government Report Finds Living Centers For People With Disabilities Have Not Conducted Inspections In Years
By Sarah Kim, Forbes, August 14, 2019
Earlier today, the U.S. Department of Health and Human Services (HHS) of the Office of Inspector General (OIG) released a report that reveals that the Administration for Community Living (ACL) has not conducted its required oversight of independent living programs for the last five years.

Americans with disabilities often face severe obstacles in life, such as getting a job, finding adequate transportation methods and living independently at home. Therefore, these independent living service programs play an integral role in bridging the gap between the inaccessibility of society and the livelihoods of people with disabilities. If the systems that are supposed to support them do not do their due diligence, then this already disadvantaged population is left even more vulnerable. 

Since July 2014, the ACL has been regulating two separate independent living programs: the Centers for Independent Living and Independent Living Services. These programs aim to support the independence of people with disabilities nationwide by providing tools, resources and support for integrating the disability population fully into their communities. In doing so, the programs promote equality, freedom, and respect. Services rendered by these programs include providing discretionary grants to nonprofit organizations and improving nursing homes and other assisted-living institutions. 

Under section 706(c)(1) of the Rehabilitation Act of 1973, which governs both programs, the ACL must conduct onsite compliance reviews of at least 15% of the Centers for Independent Living programs that receive funds under this law.
Without these congressionally mandated site reviews, program funds are vulnerable to fraud, waste and abuse.

Upon receiving a hotline complaint in June 2017 alleging that the ACL was not conducting required oversights, the HHS of the OIG conducted an audit of 284 Centers for Independent Living and two Independent Living Service programs that receive federal grants from the ACL. The department was not aware that the onsite inspections were not being conducted until the receipt of the hotline complaint. 

The audit team at the HHS conducted their fieldwork from July 2018 through December 2018. 
The ACL was appropriated $156.6 million for independent living program services during the audit period of October 1, 2015, through September 30, 2017. Although the ACL awarded $151.5 million to grantees for independent living program services, it did not allocate sufficient funds from the remaining $5.1 million to support onsite compliance reviews. 

At the end of the report, the HHS provides recommendations for the ALC: determine whether it can allocate its funds differently to enable onsite compliance reviews, seek additional department funding or resources to conduct the onsite compliance reviews and perform the required onsite compliance reviews of independent living programs.

Agency Did Not Conduct Required Oversight of Program for Those with Disabilities
By Yasmeen Abutaleb, the Washington Post, August 14, 2019
Health and Human Services officials have failed to conduct required visits of independent living programs for thousands of people with intellectual and physical disabilities, the agency’s Office of the Inspector General found.

The Administration for Community Living, created within HHS in 2012, administers two independent living programs, which aim to help people with disabilities find housing services, job opportunities and other resources. By law, ACL must carry out compliance reviews of at least 15 percent of the programs that receive federal funding and in at least one-third of the states that receive the funding. The inspector general found ACL has not conducted such visits since it assumed oversight of the programs five years ago.

ACL said it could not conduct the reviews because of limited funds for travel. The office is given a set amount of funding to administer grants to independent living programs and monitor them, but OIG determined it did not set aside enough money to conduct its oversight activities.
“The problem is that these organizations, they’re not large. They’re serving beneficiaries that need a lot of services,” said Mike Barton, assistant regional inspector general for audit services. “These on-site visits would help to ensure the services are being provided, but it’s not being done.”

ACL contends it provides proper oversight through a program it piloted that monitors compliance activities, outcomes, fiscal operations and reports from the programs’ operations.

But disability advocates maintain that visits are critical to ensure the programs are not only operating most effectively, but adequately serving a diverse set of beneficiaries who rely on the services to live independently.

Other State News:
Washington - Care Provider for Spokane Adults with Disabilities Accused of Neglect, Abuse One Year after Sister Company Shut Down
By Chad Sokol, The Spokesman-Review, August 14,. 2019

A year after shutting down a troubled provider of in-home care for people with developmental disabilities, the Washington Department of Social and Health Services is cutting ties with the provider’s sister company, citing similar problems of neglect, abuse and mismanagement that allegedly resulted in one woman’s death.

Families and disability advocates criticized DSHS last year when the agency revoked the license of S.L. Start & Associates and placed many of its clients under the care of Aacres Washington, even though both providers are owned by the same company, Spokane-based Embassy Management.

DSHS announced Tuesday it is terminating its contract with Aacres, which provides state-subsidized “supported living” services to nearly 60 adults with developmental disabilities in the Spokane area. The contract is worth more than $700,000 a month.

“We have lost confidence in Aacres Spokane,” Evelyn Perez, who leads the agency’s Developmental Disabilities Administration, said in a statement. “Not being in compliance with regulations and ensuring the health and safety of our clients is unacceptable.”

After multiple investigations, DSHS ordered Aacres to stop accepting new clients on July 10 and issued the provisional certification last Friday, citing “continued noncompliance” with client care requirements.

Among other deficiencies, DSHS found that Aacres staff, including a supervisor, failed to report incidents of “isolation and mental abuse” of three clients. Aacres staff also failed to ensure that one client took mental health medication for six days, and failed to notify the doctor who prescribed that medication, according to a “statement of deficiencies” report.

The company also failed to update personalized care plans for multiple clients and failed to ensure that staff met state-mandated training requirements, the report says.

Oregon - $4.5 million Lawsuit Alleges Abuse of Developmentally Disabled Man at State-Licensed Group Home
By Diana Kruzman, The Oregonian, Aug 11, 2019
In September 2014, Margaret Lamb dropped off her 21-year-old son at a green, one-story house in Gresham with mixed feelings.

She knew her son required more care than she could provide as a working single mother. She hoped the state-licensed group home for developmentally disabled adults would provide Matthew Lamb with the specialized attention he needed.

But she didn’t realize she would spend the next four years trying to get him out.

She’s now suing the company that operated her son’s group home as well as Multnomah County and the state of Oregon, alleging they failed to care for Matthew Lamb, protect him or properly investigate her complaints about his treatment.

The suit seeks up to $4.5 million in economic and noneconomic damages.
Matthew Lamb, now 26, has cerebral palsy and developmental disabilities as well as vision and hearing impairments. He has the mental aptitude of a 3-year-old, but is “a smart, loving, active, sociable and teachable individual,” the suit says.
“I felt so helpless and so hopeless,” Margaret Lamb told The Oregonian/OregonLive. “It’s like these people that are supposed to be taking care of him are betraying every trust that you put into them.”

In her suit, Lamb alleges the inattention of Dungarvin Oregon employees allowed her son to be physically abused by other residents and potentially exposed to sexual abuse by another resident at the group home on 193rd Avenue. He also was left in isolation for long periods of time, according to the suit.

Washinton, D.C. - This Bill would Increase Pay for more than 4,000 Professionals who Assist People with Disabilities
By Leah Potter, Street Sense Media, August 15, 2019
Thelma Green said her direct support professional of 12 years helps her every day to get in and out of the shower, get dressed, and schedule transportation.

Green, who is a member of Project ACTION! — an organization for self-advocates and advocacy groups for people with disabilities — said her direct support professional helps her to live as independently as possible.

“I trust her, she is almost like family,” Green said at a public hearing in June before D.C. Council went on summer recess. “We need to respect the hard work they do.”

Green, like almost 50 other people who testified at the hearing, is in support of the Direct Support Professional Payment Rate Act of 2019. Public witnesses said the bill would ensure that people with disabilities receive stable and quality care from an adequately paid workforce.

The bill would be the first District-wide push to set a higher minimum wage specific to direct support professionals. If passed, the bill would increase pay for more than 4,000 people.

New York - People with Disabilities Accuse New York of Putting Their Lives at Stake by Cutting CDPA
By Nancy Cutler, Rockland/Westchester Journal News, August 15, 2019
Oliver Hilario uses a motorized wheelchair and needs help with the basics — getting out of bed, dressing, eating. But the 32-year-old is still the boss. He's managed his own supportive care for years as a participant of the Consumer Directed Personal Assistance program.

But impending program changes could jeopardize Hilario's desire to control who cares for him. It could even threaten his ability to live at home. "I really like my house," the West Haverstraw resident said. "My home is like my man cave."

Starting Sept. 1, the state Department of Health will change the way it pays "fiscal intermediaries" — the nonprofit agencies and companies that handle all the back-office duties for the CDPA program. The change, advocates for the disabled say, will devastate agencies that support the program and could force many to close within a year.
That's the concern of Carlos Martinez, executive director of BRIDGES, the nonprofit independent living center that provides fiscal management for Hilario and more than 300  other Rocklanders who use CDPA. "It would cut over 60% of our administrative budget,” Martinez said.

While the New City agency provides various programs for people with disabilities and veterans, Martinez doubts BRIDGES would be able to keep its fiscal intermediary duties for the consumer-directed care program.

"If you have agencies shutting down," Martinez said, "you have people going into nursing homes.”

More than 70,000 New Yorkers use the consumer-directed program.

Massachusetts - DDS launches ‘licensing review’ following allegations of poor care in provider’s group homes
By Dave Kassel, The COFAR Blog, August 12, 2019

The Department of Developmental Services is conducting a “special licensing and program integrity review” in response to allegations of poor care in group homes operated by a provider licensed by the Department.

In an August 8 statement provided to COFAR, DDS Commissioner Jane Ryder also said that DDS is investigating the allegations and is requiring the Springfield-based provider, the Center for Human Development (CHD), to implement a corrective action plan. The Department has also conducted unannounced visits to the residences, Ryder stated.

“DDS takes the health and safety of individuals it serves very seriously, and is conducting a thorough investigation into the allegations,” Ryder added.

Ryder’s statement was provided nearly a month after COFAR asked for comment from her regarding a series of allegations raised by Mary Phaneuf, the foster mother of Timothy Cheeks, a 41-year-old resident of a CHD group home in East Longmeadow.

Last year, Phaneuf began raising concerns with CHD and DDS about Tim’s care, including a lack of  proper medical care for Tim and no documented visits to a primary care physician or dentist for seven years. Phaneuf also said there were no documented visits to a cardiologist for six years despite Tim’s having been born with a congenital heart defect.

Last week, CHD acknowledged the missed medical appointments for multiple clients, “failures to follow protocols,” and financial misappropriation in two residences. Those problems include an alleged failure to ensure that Tim was receiving Social Security benefits for at least two years, and the alleged diversion of food stamp benefits from Tim and at least one other client.

Nebraskans with Developmental Disabilities Wait for Services
By Martha Stoddard, Associated Press, August 10, 2019
Erin Phillips has made great strides in the three years since moving out of her parents’ home.The 31-year-old has learned how to do her laundry entirely on her own. She takes showers with only a little nudging. She cleans her own bedroom and bathroom.

That’s on top of working part time at a local grocery store and speaking out as an advocate for herself and other Nebraskans with developmental disabilities.

But the Lincoln woman could have been further down the road toward independence if she had not spent seven years “on the wait” for developmental disability services from the state.
“We wanted to normalize her life, we wanted her to be as independent as she could be, but I couldn’t do anything while she was on a waiting list,” Mary Phillips, Erin’s mother, told the Omaha World-Herald.

Waiting for developmental disability services has been the norm for decades in Nebraska, despite a 1991 state law promising services for everyone needing them. More than 2,300 people are on a waiting list for services including job coaching, training workshops, group homes, residential services, respite care and more.

Nice Story of the Week:
Providing the Physically Challenged Access to Connecticut’s Shoreline with Floating Beach Wheelchairs
By Peter Marteka, The Hartford Courant, August 6, 2019
For many, a trip to the beach is one of summer’s greatest pastimes. Whether running across the beach and into the water or taking a leisurely stroll across the sand, many take a visit to Long Island Sound for granted as a rite of summer.

But for some, the beach can be a foreboding place with its hot, shifting sands and difficult access into the water. Massachusetts-based SMILE Mass (Small Miracles in Life Exist) is hoping to make going to the beach easier with the donation of
floating beach wheelchairs to Fairfield, Norwalk and Westport - the first recipients in the state. SMILE has donated more than 130 wheelchairs throughout New England.

The company notes the wheelchairs, which resemble beach recliners and float in the water, have large shock-absorbing wheels that maneuver easily over the sand. Those using the chairs in Long Island Sound will be able to use the buoyant properties of salt water for physical therapy.

Other National News:
Psychiatrists Considering Change To Intellectual Disability Criteria
By Courtney Perkes, Disability Scoop, August 12, 2019
A proposed revision to the diagnostic criteria for intellectual disability is prompting concerns about underdiagnosis and a loss of services and legal protections for people with the condition.

The American Psychiatric Association, or APA, is considering altering the entry for intellectual disability in the Diagnostic and Statistical Manual of Mental Disorders-5, or DSM-5. Often called the bible of psychiatry, psychiatrists, researchers, insurers and others rely on the manual to determine what symptoms are worthy of a diagnosis.

At issue is a connection between two of the three criteria for diagnosing intellectual disability. The three criteria are: deficits in intellect, deficits in adaptive functioning or daily life skills, and onset during childhood.

One sentence, which was included when the DSM-5 was released in 2013, appears to require that adaptive function deficits be caused by intellectual deficits, said Margaret Nygren, executive director and CEO of the American Association on Intellectual and Developmental Disabilities, or AAIDD.
It reads in part, “the deficits in adaptive functioning must be directly related to the intellectual impairments.” In 2018, AAIDD requested that the sentence be struck.

Instead, APA has proposed replacing it with language that says in part “deficits in adaptive functioning are a consequence of intellectual deficits.”

VOR opposes the change proposed by the AAIDD, on the basis that it would dilute the meaning of the term "intellectual disabilities".

VOR's Caroline Lahrmann authored our letter to the APA opposing this effort by AAIDD to alter this defiinition.

IEP Meetings Warrant Time Off From Work, Labor Department Says
By Michelle Diament, Disability Scoop, August 16, 2019
A new opinion letter from the U.S. Department of Labor suggests that many parents of kids with disabilities are entitled to take time away from work to attend their child’s individualized education program meetings.

In response to an inquiry from a parent, the federal agency said that employees can qualify for leave under the Family and Medical Leave Act, or FMLA, if their presence at an IEP meeting is significant to their ability to provide care for their children.

FDA Warns Of Life-Threatening Side Effects From Supposed Autism Treatment
By Shaun Heasley, Disability Scoop, August 14, 2019

Federal officials are warning against the use of a dangerous and unproven product that’s peddled online as a treatment for autism and other conditions.

The Food and Drug Administration says that consumers should not purchase or drink products known as Miracle or Master Mineral Solution, Miracle Mineral Supplement, MMS, Chlorine Dioxide (CD) Protocol, Water Purification Solution or similar.

MMS is not approved by the FDA for any purpose. Nonetheless, the product is often promoted on social media as a remedy for everything from autism to cancer, HIV/AIDS and the flu, the agency said.

Those selling MMS generally direct consumers to mix the sodium chlorite solution with some type of citric acid before drinking.

“When the acid is added, the mixture becomes chlorine dioxide, a powerful bleaching agent,” the FDA said in its warning to the public. These chemicals are the active ingredients in disinfectants, the agency notes, and are not intended to be swallowed.

At NCD's Recommendation, All U.S. Dental Schools will Train Students to Manage Treatment of People with Intellectual, Developmental Disabilities
PR Newswire, August 14, 2019

As recommended by the National Council on Disability (NCD), all U.S. dental schools must now revamp their curricula and training programs to be inclusive of patients with intellectual and developmental disabilities (ID/DD). The Council on Dental Accreditation (CODA) recently passed votes requiring dental schools to now train their students in managing treatment of patients with ID/DD. Previously, patients with ID/DD were largely unable to obtain dental care treatment because dental students were simply not required to learn to manage their treatment.

"Every dental patient in America deserves the same care, whether or not they have a disability," said NCD Chairman Neil Romano. "NCD applauds this decision that we view as necessary for people with ID/DD to obtain critical access to dental treatment, which is critical to the total health of all people." 
CODA held and passed four related votes regarding the predoctoral dental, orthodontics, dental hygiene, and dental assistant programs:

For predoctoral programs and orthodontics programs, dental students must be trained to assess and manage the treatment of patients with "special needs [ sic]."

For dental hygiene programs, students must be competent in providing care to "special needs [ sic]" patient populations.

For dental assistant programs, students must be familiarized with patients with "special needs [ sic]" including patients whose medical, physical, psychological, or social conditions make it necessary to modify normal dental routines.

CODA generally defines people with "special needs ( sic)" as people with developmental disabilities, cognitive impairment, complex medical problems, significant physical limitations, and the vulnerable elderly.

Changes for the predoctoral dental, dental hygiene, and dental assistant programs are required to take effect by July 1, 2020, with changes to the orthodontics programs required by Jan. 1.


Note: VOR has been working on this issue for decades, back when Louise Underwood helped with the founding of the Lee Specialty Clinic in Kentucky. Our more recent efforts began in 2016 with proposals oddly similar to the one above, during meetings with the Administration for Community Living (ACL) and the Centers for Medicare and Medicaid Services (CMS). Nonetheless, we are grateful to see these programs being implemented.
The HEADs UP Act:
Opinion - Ensuring Quality Health Care for those with Intellectual Disabilities and Autism
By Jo Ann Simons, The Hill, August 14, 2019

The last half century has seen unprecedented progress in the U.S. medical system. Countless genetic mutations have been identified, and scores of formerly fatal illnesses have been eliminated or significantly lessened thanks to unrelenting scientific breakthroughs. The average life expectancy of the American citizen has risen roughly nine years, in part due to new technology, expanded care options and personal commitments to improving health and wellness.

While the future of medicine is bright, and our children will live longer than ever before, we are not doing all we can to ensure quality care for everyone in our society. Health issues, and issues of health care access and disparity, continue for certain demographics in America—including one group that has historically been, and continues to be, unfairly left behind: people with intellectual disabilities and autism.

About 6.5 million American men, women and children are living with Intellectual and Developmental Disabilities (I/DD).

But according to a study published by the United States Center for Disease Control, the statistics demonstrate just how badly our current system is failing them on the very basics of quality health care. People living with I/DD are nearly four times as likely to suffer from heart disease, 30 percent more likely to be obese, and 60 percent more likely to smoke. Where is the health education and early intervention, specifically targeted to these groups, that has worked well in the general population to dramatically reduce these health care disparities?

Given that this population is at significantly higher risk of a myriad of health problems, early intervention and regular access to convenient and reliable health care is crucial. Unfortunately, people with I/DD are more than twice as likely than the average citizen to not receive care due to costs. In other words, the very group that most desperately needs more care and attention is the same group that is significantly less likely to receive that care.

As CEO of the Northeast Arc, I have the good fortune to meet countless amazing people and have worked on many important initiatives aimed at improving the quality of life for those with intellectual and developmental disabilities. That’s why I’m proud to be supporting the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population (HEADs UP) Act put forward by Rep. Seth Moulton (D-Mass.), and his colleague Rep. Brian Fitzpatrick (R-Pa.).

This critical piece of legislation directs the Health Services and Resources Administration to officially designate Americans with I/DD as a Medically Underserved Population, as outlined in the 1996 Health Centers Consolidation Act. HEADs UP would immediately improve health care options available to I/DD patients by giving them access to more than 25 federally funded programs.

If passed, Americans with I/DD would be able to benefit from new federal funding for health centers, loan repayment access, training programs, physician incentives to treat those with I/DD, and increased funding and preference for research at federal agencies.

The passage of this bill is an opportunity for Congress to take action and provide concrete and much needed resources for individuals who live in communities across this country. By tackling health issues and access barriers for our I/DD population, we’re strengthening our citizenry and showing care and compassion for some of the bravest, toughest and most wonderful people in America.
After decades of inaction, the time is now. Please join me in supporting this critical piece of legislation, and help America keep its promise to its millions of citizens with intellectual and developmental disabilities.

Jo Ann Simons is the president and CEO of Northeast Arc.

VOR supports the HEADs UP Act.
VOR Bill Watch:
Click on blue link to view information about the bill


H.R. 1058 & S. 427 - The Autism CARES Act - To reauthorize certain provisions of the Public Health Service Act relating to autism, and for other purposes

H.R. 2417 - 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. 555 & S. 117 - The Disability Integration Act - This bill has written into it the goal of eliminating "institutional care". In addition to the inherent bias against ICF's and people with severe and profound I/DD, the bill is prohibitively costly and there are not enough Direct Support Professionals to meet the provisions of this act.

H.R. 873 & S. 260 - The Transformation To Competitive Employment Act - This bill has declared the goal of eliminating Sheltered Workshops and 14(c) Wage Certificates, under the mantle of everyone with a disability is capable of competitive integrated employment.

H.R. 582 & S. 150 - The Raise the Wage Act - This bill is aimed at raising the minimum wage, but it also has provisions to eliminate 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.
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