November 29, 2019
NOTE: There will be no newsletter next week. We will be back on December 13th.
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
VOR and YOU:
VOR And Me

By Rita Hoover, Member VOR Board of Directors

Through VOR I have a new purpose to honor the life my son Timothy. 

Working together, we are A Voice of Reason - speaking out for people with intellectual and developmental disabilities.

Your voice and the voice of your family member are heard in the halls of Congress. 

We work together to deflect federal legislation that is harmful to the safe homes and specialized services that protect and enable your family member to thrive in the community of their choice.

Rita Hoover, Mother of Timothy
Rita and Tim
Thank you for your donation!

National News :
Note: The following is presented for information to our members. It is not an endorsement of MFP. We feel our readers are better advocates when they are better informed about the issues and the way they are framed by mainstream advocates - VOR
Medicaid’s Money Follows the Person Program: State Progress and Uncertainty Pending Federal Funding Reauthorization
By MaryBeth Musumeci, Priya Chidambaram, and Molly O'Malley Watts, Kaiser Family Fouundation
November 25, 2019

  • Medicaid’s Money Follows the Person (MFP) demonstration provides states with enhanced federal matching funds for services and supports to help seniors and people with disabilities move from institutions to the community. Over 90,000 people have participated in MFP from 2007 through June 2018.With a short-term funding extension set to expire on December 31, 2019,

  • MFP’s future remains uncertain for the 44 states participating in the program, without a longer-term reauthorization by Congress. Twenty percent of MFP states will have exhausted their current funds by the end of 2019, and the vast majority of the remaining states expect to do so during 2020.

  • Over one-third of MFP states identified a range of services that they expect to discontinue if federal funding expires, with community transition services most often cited. States also expect that they will not be able to maintain staff and activities focused on enrollee outreach and community housing, which are financed with enhanced federal matching funds.
She Didn’t Know Her Autistic Son Could Be Tasered At School
By Rebecca Klein, Huffington Post, November 26, 2019
Rosie Phillips says she found her nonverbal son dazed and with Taser prongs still in his body. A HuffPost investigation shows that kids are getting Tasered at school around the country.

SHREVEPORT, La. ― Two years ago, at the start of the school year, Rosie Phillips got a call from her son’s school, asking her to come pick him up. When she arrived, she found him slumped on the hallway floor, sitting in a puddle of his own urine, with a Taser prong still attached to his body. A crowd of adults huddled around him, staring and chatting, not paying him much attention. Phillips called her son’s name, and he looked at her blankly.

Phillips waited hours for the vacant stare to fade from the 17-year-old’s face. Two years later, it still haunts her. Was it a look of fear? Anger? Submission? She imagines it over and over, searching her memory for clues.

Phillips will never know the full story of what happened at Northwood High School in Caddo Parish that morning. Her son, J.H., has autism and is nonverbal. From what she’s pieced together since watching security footage and talking with a witness, J.H. was stressed, and left the classroom to go to the bathroom. On his way back, he started engaging in stimming behaviors, a repetition of movements that is common in kids with autism. He lingered in the hallway, rubbing against the wall, cupping his ears and closing his eyes.
Phillips, who worked for the state of Louisiana for 34 years and now works part-time at a restaurant, didn’t know her son could be Tasered at school. She didn’t know it had already been happening all around the country for years, or that people like her son were especially at risk. 

While some forms of discipline, like suspensions or referrals to police, are meticulously documented, there isn’t any systematic tracking of how often kids are Tasered at school. Through tracking local news reports on the issue and lawsuits, HuffPost has created its own minimum count.

Our investigation found that children have been Tasered by school cops in at least 143 incidents since September 2011. We specifically tracked incidents where the cop worked full or part time at the school. Our number represents a bare minimum count, as most of these incidents are likely not reported by local media or subject to litigation. 

Over the past several years, children have been Tasered for a range of behaviors, sometimes merely for childhood misbehaviors like talking back, even as these weapons have the ability to seriously injure or even kill, our investigation found.

State News:
Connecticut - Ob-Gyn Practices Falling Short in Caring for Women with Disabilities
By Elizabeth Heubeck, CT Post - Health I-Team
November 27, 2019
Over the past 20 years, Connecticut women with cognitive or physical disabilities have found their way to the Gaylord Specialty Healthcare’s Gynecological Clinic for Women with Disabilities in Wallingford. There, obstetrician-gynecologist Anna Tirado provides routine and preventive gynecological care to disabled women.

Now nearing retirement age, Tirado isn’t sure what will happen when she no longer sees patients. “I am very worried. The patients are not going to be easily absorbed into a private practice,” she said.
An estimated 207,100 female residents of Connecticut have at least one disability, according to U.S. Census Bureau data. The disabilities range from barely noticeable to those that render women unable to see, speak, move freely, or make sound decisions. But no matter the type of disability, all women need access to gynecological health care.

Tirado’s concerns are valid. Most ob-gyns receive little to no medical education or training on how to provide care to patients with disabilities. Nor do they get fully reimbursed for the lengthy time required to gain the trust of patients with disabilities and an understanding of their health needs. (Tirado spends up to an hour with new patients). And while experts say that research and awareness around individuals with disabilities have increased dramatically in recent years, for too many women with disabilities, access to quality gynecological care remains a matter of persistence.

Elaine Ricciardi of Milford understands the level of trust in their doctor required by patients with disabilities. Her daughter, now 55, was born with a condition so rare it was nameless; it resulted in intellectual and developmental delays, blindness, and seizures.
Ricciardi’s daughter has been a patient of Tirado’s for over 10 years. Ricciardi, who founded Pathfinder Associates Inc. in Derby in 1980 to provide supervised homes for adults with intellectual disabilities, also has sent many of her clients to Tirado.

“Dr. Tirado has a very special way about her. She makes patients comfortable, and has a tremendous amount of patience,” Ricciardi said. “They end up being able to get physical exams, which they all desperately need.”

Tirado recalled one patient with developmental disabilities who hadn’t seen a doctor in 20 years. “Unless you handle it right, a gynecological exam can be very traumatic to these patients,” Tirado said.

Depending on the level of cognition, Tirado said, a patient may not understand why an exam that feels physically intrusive is taking place. Tirado said that patients with disabilities are also much more vulnerable than the general population to sexual assault. For these reasons, Tirado explains to patients everything that is going to happen during a physical exam prior to conducting it.

In Missouri, People who Can’t Speak and See Wait in Line for Help
By Jesse Bogan and Kurt Erickson, St. Louis Post-Dispatch, November 24, 2019
Marcus Logan came into the world another happy, healthy baby. He learned to walk, talk, use the potty and identify colors. Then, at about 3, something changed. To his mother’s alarm, she’d find him sitting in one spot, rocking back and forth.

Today, he is 22, nonverbal and on a waiting list to receive much-needed assistance funded by Medicaid. Recently in line for a doctor to evaluate him for a new adult diaper prescription, he wore a blue helmet just in case he had a seizure or tried walking on his own.

Wynester prays that his name will come up soon on the Medicaid waiver waitlist. He’s one of 86 Missourians with developmental disabilities who have been approved by the state for long-term, 24-hour residential care but are stuck where they are because the waivers haven’t been fully funded.

State lawmakers cut the budget for new Medicaid waivers from $31.4 million to $8.5 million, including both state and federal funds. That $8.5 million is enough to fund about 440 waivers this fiscal year
— or roughly five new clients a month like Marcus who need residential care and 30 new clients a month who need less costly, specialized support services. That’s still far fewer than the 1,300 who the state estimated will need the services.

Advocates say the waitlist is not a mere inconvenience, but that it puts people already in crisis at risk and threatens the stability of families in less extreme situations. Some people remain in hospitals, unable to be transferred to less restrictive — and less costly — environments. Some feel isolated by being housed at home or in the same programs that aren’t fully addressing their needs and potential. Parents have fallen out of the job market to be caregivers.

Kansas: Tragedy and Triumph: Views on Kansas’ Support of People with Disabilities
By Tim Carpenter, Topeka Capitol-Journal, November 23, 2019
Robbie Kramer was mourning the loss of her 27-year-old son as she stepped to a microphone at the Capitol to speak from the heart to a Kansas Legislature oversight committee about the potency and cruelty of the state’s services for people with disabilities. “I ask for a little patience today as just this week my husband and I are mourning the loss of our son,” she said.

She said Keith contracted a disease with no known treatment that required 24-hour, seven-day-a-week medical care from the time he was an infant through his life as an adult. He used a ventilator to help breathe and a gastronomy tube to be fed. His state support plan of specialized care, designed to allow him to live at home, called for a skilled nurse to be present 20 hours each day. It was a godsend when it worked, she said. When it didn’t, she said, the Kramer family had no option but to fill gaps.

A conversation she had about inconsistent nursing assistance triggered a formal grievance with the Kansas Department for Aging and Disability Services. The nursing provider retaliated, Kramer said, and the insurance company earning about $1 billion annually in Kansas to administer Medicaid under the system named KanCare gave notice it would begin enforcing a policy limiting nursing aid to 12 hours a day. The family’s appeal prevented immediate implementation of the 40% reduction in aid.

“This system can be very cruel to parents and people with disabilities. The programs are a lifesaver when they work,” she said. “While Keith is now gone, I hope by sharing our experiences with the ‘system’ might help make things better for other families to not be isolated.”

The Legislature’s bipartisan oversight committee of House and Senate members recently gathered reams of testimony from individuals and organizations with ideas for improving a Medicaid system serving more than 360,000 disabled, elderly and poor Kansans.

KanCare is a $3 billion program financed primarily by the federal government with state support. There is an ongoing political battle in Kansas about broadening eligibility for Medicaid to 130,000 to 150,000 lower-income adults and children.

Gardner resident Joan Kelley shares guardianship of a 29-year-old profoundly disabled, nonverbal grandson who functions cognitively at the 3-year-old level and exhibits unpredictable, dangerous behaviors. She challenged pressure by advocacy organizations and state officials to direct high-risk disabled people into community- or home-based facilities as opposed to facilities such as the Kansas Neurological Institute in Topeka.

She said KDADS was required by law to provide assurance to federal Centers for Medicare and Medicaid Services that both community-based and the intermediate care facilities, including KNI, were offered as options to disabled individuals in Kansas.

“In reality,” Kelley said, “this is not occurring and cannot be implemented under current Kansas ICF gatekeeping policies, which forbid access to the ICF option of care” until families of a person with disabilities exhaust all community options. “Many Kansas families are exhausted, struggling to provide 24-7 care to the most complex individuals.”

Kelly said time had come for the Legislature to determine whether KDADS was offering true choice to the state’s most vulnerable citizens.

Massachusetts - When it Comes to Investigating Abuse of the Developmentally Disabled, It All Appears to Go Around and Around
By Dave Kassel, The COFAR Blog, November 25, 2019

Charles Dickens named his ultimate bureaucratic agency the Circumlocution Office because the public’s business just got passed around in circles in the department.

At least some of that appears to be going on among state agencies when it comes to investigating abuse of persons with developmental disabilities in Massachusetts, according to a review of public records of three state agencies by COFAR.

It appears to be the case with all forms of abuse that the referral and investigation process starts and ends with the Department of Developmental Services (DDS).

In fact, one of the agencies involved – the Executive Office of Elder Affairs (EOEA) – referred 25 years ago to the process of investigating abuse involving DDS and Department of Mental Health clients as “circuitous,” and stated that attempts to change it through legislation had not been successful in the previous two years. That memo, which we recently received from EOEA, was written in 1994.
COFAR requested and reviewed data and other information on investigations from DDS, the Disabled Persons Protection Commission (DPPC), and EOEA of financial and other types of abuse. We requested the information from each agency under the state’s Public Records Law.
The circularity appears to start with the fact that DDS is required by state regulations to report all abuse allegations to DPPC, the state’s only independent agency for investigating abuse of disabled adults. But DPPC lacks jurisdiction to investigate financial abuse, in particular, according to the agency’s assistant general counsel, so it refers those cases back to DDS to investigate.

DPPC also lacks jurisdiction to investigate abuse of the elderly, so it refers allegations of all types of abuse involving persons over the age of 59 to EOEA. But EOEA then also refers those same allegations to DDS to investigate if they involve persons living in DDS facilities, according to EOEA officials we talked to and to the 25-year-old memo.

Massachusetts - Pediatric Dentist fills Health Care Role in Special Olympics
Updated 5:20 pm EST, Tuesday, November 26, 2019

Twenty-five years ago, when Dr. Steven Perlman, a pediatric dentist, received a surprising phone call from Eunice Kennedy Shriver, he had no idea about the path his life would take.Shriver had combed the country looking for someone who could treat her sister, Rosemary, who was having severe dental problems. Rosemary Kennedy was born intellectually disabled, and was living in a Wisconsin sanitarium.

Her doctors there wanted to pull all her teeth, and Shriver, one of her two guardians (the other being Sen. Edward M. Kennedy), balked.

“That,” said Perlman, 73, “was a big deal.”

“How does the Kennedy family find a pediatric dentist 1,500 miles away to work on their sister, and then fly her to Boston to work on her?” Perlman asked.

Perlman was happy to accommodate even though that meant making sure Kennedy was healthy enough, and stable enough, to make the trip to Boston and be treated. “I had to know she was capable of flying in, and whether she would be able to receive general anesthesia.”

Perlman, who had a thriving practice on Broad Street in Lynn at the time, said Kennedy was flown into Boston and taken to Lynn’s Union Hospital for the procedure. “It was all done in a clandestine way,” he said. “Fake name, strict secrecy, there were Secret Service men who never left her side, and she had a nun who was assigned to her full time. She never left Rosemary’s side.”

Perlman worked on her for five hours, never having pulled a tooth.

“It was an exciting time for me,” he said.

But what came next was even more exciting — and much more meaningful.

“Eunice wanted to meet me, and thank me,” said Perlman. “Two weeks later, I got a call from the Kennedy Foundation, and I’m in a room with Eunice Kennedy Shriver and Sargent Shriver.
Now, Eunice is impressive enough,” Perlman said. “But this was R. Sargent Shriver. Founder of the Peace Corps. Ran for vice president. And here I am, in a room with them.”

Eunice Shriver wanted to talk about dental care for the intellectually disabled.

Ohioans Can Comment on Developmental Disabilities Class-Action
By Rita Price, The Columbus Dispatch, November 17, 2019
The public still has time to comment on a proposed settlement agreement that would end a three-year legal fight over community-based services for Ohioans with developmental disabilities. Filed in 2016, the federal lawsuit is still drawing fire from families who say it threatens funding for the residential centers where their loved ones reside.

A three-year legal battle over how and where Ohioans with developmental disabilities make their homes is drawing to a close, but the public still can submit comments before the proposed settlement agreement becomes final.

Larry Koebel plans to do just that, telling a federal judge in U.S. District Court in Columbus that he worries the proposal to end the class-action lawsuit against the state puts his son, Doug, at risk.

Doug is 48 and has the cognitive ability of a 3-year-old. He has long resided in an “intermediate care facility,” or ICF, with around-the-clock staff, a private suite and high-quality services to meet his complex needs, Koebel said.

Koebel thinks future funding for ICFs could be threatened if the state runs short of money after fulfilling promises made in the settlement.
According to the proposed agreement, the Ohio Department of Developmental Disabilities will significantly expand access to the Medicaid-funded waivers that pay for community-based services so that more people have the option of living in houses and apartments rather than ICFs.
“I totally support anything that helps a person who wants or needs a better living environment,” Koebel said. “My concern is, ‘Where will this money come from?’”

The Gahanna resident said he and other parents wonder whether “that money could come from funding that goes to ICFs. Eventually, they get financially starved, beds disappear and facilities close.”
Disability Rights Ohio and other advocates for people with developmental disabilities sued the state in 2016, arguing that Ohio was violating the federal Americans with Disabilities Act by operating a system that makes it difficult or impossible for people to get the support and services they need to live and work in their communities instead of institutions. Disability Rights said at the time that more than 2,000 Ohioans wanted to leave an ICF but faced a years-long wait for one of the Medicaid waivers that helps pay for noninstitutional care.

“What the public should know is that when given the option of community settings or an intermediate care facility for individuals with intellectual disability, ICF residents overwhelmingly chose to stay in their ICF,” said Caroline Lahrmann, whose adult twins have profound disabilities and reside in an ICF.

Disability Rights has said it is not advocating for the closure of larger residential centers or sheltered workshops, but that no one should feel stuck.
“ICFs are absolutely a part of our system, and the department’s fully committed to maintaining that option,” said Jeremiah Wagner, a spokesman for the state Department of Developmental Disabilities. “There’s more money being invested across the whole system to an array of services. I don’t think anyone’s being squeezed.”
Koebel said he’ll suggest that the court include language in the final settlement that preserves funding for ICFs as long as the agreement is in effect.

U.S. Department of Health & Human Services:
2019 Interagency Autism Coordinating Committee Call for Nominations Announcement

The Office of the Secretary of the Department of Health and Human Services (HHS) is seeking nominations of individuals to serve as non-federal public members on the Interagency Autism Coordinating Committee (IACC). Nominations will be accepted between Tuesday, November 19, 2019 and Friday, January 24, 2020.

As specified in the Combating Autism Act of 2006 (Public Law 109-416) and reauthorized by the Autism Collaboration, Accountability, Research, Education and Support Act of 2019 (Public Law 116-60). The Office of the Secretary has directed the Office of Autism Research Coordination (OARC) of the National Institute of Mental Health, National Institutes of Health to assist the Department in conducting an open nomination process. Appointments of non-federal public members to the committee shall be made by the Secretary of Health and Human Services.

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VOR Bill Watch:
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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. 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.

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.
Sponsors of the bill recently added a new summary that significantly downplays the effect the bill would have on eliminating work centers and 14(c) that benefit those who are unable to compete in the employment opportunities the bill promotes.


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).

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