November 9, 2018
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
Editorial: The "R" Word and the "I" Word

I attended a conference i Washington, D.C. earlier this week, at which a number of participants spoke of their dislike of the "R" word. The general consensus was that the "R" word is hurtful, that it had been used to insult and marginalize people with intellectual disabilities. One speaker compared using the "R" word to using the "N" word.

Now we can all agree that the "N" word has always been a term laden with ignorance, racism, and hate. We can all pretty much agree that in recent years, the "R" word deviated from its original clinical usage to describe an intellectual condition, mental retardation, to become a derogatory, insulting, and disenfranchising term. As a result, wehave stopped using the "R" word.

What struck me was the fact that most of the participants freely used the "I" word, Institution , as a demeaning term, without ever seeing the irony of their using this term in a manner that is demeaning, hurtful, and disenfranchising to those who believe that Intermediate Care Facilities (ICFs) are the best solutions for a minority of individuals with intellectual and developmental disabilities, complex medical problems, and behavioral disorders.

ICFs are a legitimate, valuable component of our full continuum of care. They deliver a higher level of service for people with higher levels of need. ICFs are certified by CMS, and must meet a much more stringent set of guidelines than waiver settings.

When members of the I/DD community derogatorily refer to ICFs as "institutions", their intent is often to equate them with the inhumane warehousing facilities of the past like New York's infamous Willowbrook State School. Modern day ICF's bear no resemblance to those institutions. The use of the "I" word is just as hurtful, just as demeaning and marginalizing to our families as the use of the "R" word might be to theirs.

The families of people with severe and profound disabilities support the goals of inclusion and competitive employment for those who have the ability to participate in these environments. But we cannot help but feel marginalized and discriminated against by others in our own community, when we hear the word "institutions" used in a demeaning manner, or when we are told that equivalent services are available in "the community". We are told that we are uninformed, afraid of risk, or that we just don't care enough for our loved ones. That is hurtful. That is demeaning. That marginalizes us.

It's time for us all to acknowledge the breadth of the disability community, and work to support one another in our individual goals of making better lives. Please don't allow others to use the "I" word to demean and marginalize those who make this choice.

The Value of VOR Membership!
VOR is a national, nonprofit 501(c)(3) organization advocating for high quality care and human rights for all persons with intellectual and developmental disabilities. For 35 years, VOR has been the only truly grassroots national advocacy organization supporting a full continuum of care options for people with intellectual disabilities and developmental disabilities, and their families. We recognize and champion the right of individuals and their families to be the primary decision-makers regarding care and policy decisions, regardless of service setting.

VOR is 100% privately funded and receives more than 95% of its financial support from families of individuals with intellectual and developmental disabilities (I/DD).

Individuals investing in VOR through membership dues and donations will receive the Weekly E-Mail Newsletter , a thrice annual print newsletter ( The Voice ), an invitation to an Annual Conference and Initiative in Washington, D.C., Action Alerts, individual advocacy, and legislative and legal advocacy. Members and supporters also enjoy the intangible benefit of supporting this truly grassroots national advocacy organization. VOR provides you with the information, networking opportunities, and tools to be a better advocate for your loved ones with I/DD.

VOR Members Work for You!

Our committees work on issues that affect your family:

  • VOR’s Issues Oversight Committee has written to the American Bar Association, The National College of Probate Judges and other associations to support the rights of guardians in the face of those who are trying to replace guardianship with alternatives that fail to protect the most vulnerable.
  • VOR’s Legislative Committee has written officials to support all levels of employment opportunities, from day programs to center-based services offering specialized wages to full competitive employment, as best suited to the needs and abilities of the individual, and we have partnered with peer organizations that support providers of center-based services.
  • VOR’s Quality of Care Committee has been promoting ways to expand high quality dental services to those unable to access them. Members of the “Q of C” are currently working to develop and promote comprehensive studies on morbidity and outcomes for individuals with I/DD who have been forcibly transferred from their years-long ICF homes and placed into smaller, often less suitable, HCBS waiver settings.
  • VOR members and our Executive Director have met with leadership of the Administration for Community Living (ACL) and the Center for Medicare and Medicaid Services (CMS) and Department of Justice (DOJ) to advocate for better reporting of critical incidents, especially those involving abuse and neglect in HCBS waiver settings, as well as for better pay, training and certification for Direct Support Professionals in all settings.
  • VOR’s State Coordinators program has enlisted members as representatives of their states, to help advocate for issues within their state, to coordinate their activities with the actions and experience of members in other states, and to understand how to coordinate their state actions with national advocacy.

Supporting VOR is a Good Investment!

This year, your generosity enabled us to:

  • Organize and participate in hearings in the House Judiciary Committee on the harm caused by class action lawsuits against Intermediate Care Facilities (ICFs)
  • Advocate for a bill to end / limit class action suits against ICFs and to ensure notification of and the power to opt-out of the class in these proceedings resulting in the introduction of bill H.R.6786.
  • Fund our Action Alert software system which allowed members to send individualized letters and e-mails to members of Congress or state legislators and speak out against bills that would close ICFs, or to help support bills that help our loved ones, and to protect them from abusive incidents in single-state and national campaigns.
  • Schedule and attend in-person meetings with legislators and their aides on Capitol Hill.
  • Schedule and attend in-person meetings with members of HHS, CMS, DOJ, ACL and the President' Committee for People with Developmental Disabilities (PCPID)
National News:
CMS is Developing a Rule that could Curtail Medicaid Transportation Access
By Virgil Dickson, Modern Healthcare, November 7, 2018
The CMS is drafting a proposed rule that would make it easier for states to stop paying for non-emergent medical transportation for Medicaid beneficiaries, a move that could drastically cut into providers' revenue.

While details of the potential rulemaking are scarce, a notice on the White House's Office of Management and Budget website said the regulation is projected to be released in May 2019.

Just the suggestion that states could cut Medicaid transportation to medical appointments already has providers on edge. Annual Medicaid spending for these trips is around $3 billion, with roughly 103 million non-emergent medical trips each year, according to researchers.

Medicaid enrollees already have a high no-show rate, and that could get worse if the CMS finalizes the rule, according to Dr. Theresa Rohr-Kirchgraber, a practicing pediatrician in Indianapolis and associate professor of clinical internal medicine and pediatrics at Indiana University.

Currently, states have to obtain a waiver from the CMS if they don't offer non-emergent transportation services.
The Trump administration first floated the idea of changing that policy earlier this year in its 2019 budget proposals.

Non-emergent transport to medical appointments has been a mandatory Medicaid benefit since the program's inception in 1965.

"Over half the trips taken today are for life-sustaining treatments," said Tricia Beckmann, a director at Faegre Baker Daniels and adviser to the coalition. "Some said that they would die or probably die if they didn't have transportation." Medicaid saved more than $40 million in hospitalization and other medical costs for patients receiving rides to dialysis and wound care treatments, according to a report by the coalition.

It's unclear if the CMS has the authority to make this change to transportation benefits, according to Eliot Fishman, who oversaw 1115 waivers under the Obama administration and is now senior director of health policy at Families USA.

"Making NEMT optional hasn't been tested in court," Fishman said. "If the administration goes in that direction, I expect there will be a legal challenge."

The CMS does not comment on pending rulemakings, according to a spokesman.

Please support H.R. 6786

H.R. 6786 - A bill to protect the interests of each resident of intermediate care facilities for individuals with intellectual disabilities in class action lawsuits by federally funded entities involving such residents and in Department of Justice actions that could result in an agreement to move such a resident from that resident's facility.

This is VOR's bill, and we have introduced this legislation over the course of several sessions of congress. Our sponsor, Bob Goodlatte (R-VA) is in his last term in Congress, and the bill will expire at the end of this session. Please contact your member of the House to ask them to cosponsor this important bill.

We will begin another round of this campaign on Sunday night. In the meantime, if you have not yet taken action, please click below to be a part of this important effort.

State News:
New York - Ex-Prosecutor Sought to Expose Non-Fatal Strangulations at NY [Forensic] Institutions
By Will Van Sant, Newsday, November 8, 2018
The husky man, wearing the dark watch cap and jacket of a state youth services aide, grabs the 17-year-old boy by the throat with both hands and drives him backward with such force that the teenager appears to rise from the ground.

The aide slams the boy’s head into a metal grate and then, still gripping the boy’s neck, he pushes him into an entranceway and against a wall. The boy’s face flushes as other staffers urge the man to stop. He finally lets go. The assault, captured in 2014 by surveillance cameras at Highland Residential Center, a juvenile prison in Ulster County, lasts 17 seconds.

The aide pleaded guilty to felony strangulation, which state law defines as restricting the breath or circulation of a victim and causing physical injury or impairment, such as loss of consciousness. He was sentenced to five years of probation and barred from holding similar caretaking jobs in the state.

The Highland attack was rare in having been captured on camera, but it was far from an isolated case. Before the attack, other instances of nonfatal strangulation had been reported at New York State’s residential centers for those with special needs.

On Staten Island, a worker at a center for the developmentally disabled had throttled a resident. In Rockland County, an aide at a youth psychiatric home had compressed a child’s windpipe, leaving the victim unable to breathe. In Broome County, a foster home worker had pushed a child into a bush and strangled him.

Patricia Gunning, who prosecuted the Highland case, detected the distressing pattern. At the time, she served as special prosecutor and inspector general at the state’s then newly established Justice Center for the Protection of People with
Surveillance footage from Highland Residential Center, a juvenile prison in upstate Ulster County, shows a 2014 altercation involving staff and residents. Credit: Ulster County Public Defender's Office.

Special Needs, which Gov. Andrew M. Cuomo took a personal role in creating.

The center was established to track, prevent and prosecute abuse or neglect at state facilities and those run by taxpayer-funded private care providers regulated by agencies that serve the developmentally disabled, incarcerated youth, those with mental health issues and other vulnerable, institutionalized groups.

Gunning’s team began a study of center records as her prosecutors brought charges in one nonfatal strangulation case after another, including one in Smithtown that led to the felony conviction of a residential home manager who had assaulted a special needs youth. As work progressed, Gunning said the team sifted through incident reports from service providers — who by law must log instances of possible abuse — and, in one 10-month period alone, identified nearly 500 that included words like “hands to the neck,” “choke” or “strangle.”

That work was just one element of Gunning’s broader attempt to document and address nonfatal strangulation assault in institutional settings across New York State — an initiative that may have been without precedent nationally.

New York - 'A Parent's Worst Nightmare' — Video Captures NYC School Bus Attendant Throttling Girl with Disabilities
By Ellen Moynihan , Graham Rayman and Ben Chapman, New York Daily News, Nov 09, 2018
A horrified Brooklyn couple says their developmentally disabled daughter was manhandled by a school bus attendant in a shocking assault caught on camera.

Shaheen and Alex Knox plan to sue the school bus company and the disgraced bus attendant for the shaking and jostling their child suffered during a ride to class at Manhattan Children’s Center on Oct 30.

Their daughter, India Knox, 13, is dependent on 24-hour medical care and has the mental capacity of a 5-year-old.

Her parents said there’s nothing the 84-pound girl could’ve done to provoke Leesel Transportation Corp. attendant Beleck Valmont, who was captured on video shaking India by her head on the way to school. Another bus staffer, who was concerned by what he saw, shot cell phone footage of Valmont’s actions and notified school officials.
“I’ll calm down, I’ll calm down,” terrified India cries in the clip, as Valmont clutches her back the back of her head, and using the hood of her coat as a handle, presses her face into the seat in front of her.

“No,” Valmont replies, before he shakes her head once again and pushes her at the bus window.

Later that day, school officials told India’s parents and the police, who arrested Valmont and charged him with six crimes including assault.

India’s father said the family is heartbroken by the incident, which left the girl traumatized and suffering from bruises and scratches.

“It’s every parent’s worst nightmare,” said Knox, 55, a talent agent. “You give people trust that they’re going to do safely transport your child to school. Assault isn’t something you expect.”

California: Free Train the Trainer Program
By Dianne Anderson, Precinct Reporter News, November 8, 2018

Mary Lee had to learn the hard way about IEP services.

Her own son is high level autistic, and in the beginning, she knew little or nothing about local available resources to get him through his childhood education, and a productive adulthood.

She just had to hunt for it.

Today, her son has a job, attends community college, and he is thriving. She feels that gaining access to the right information in the early days made all of the difference between a troubled life for her child or moving forward despite his disability.

It’s also the reason why she got involved in providing resource outreach for parents in the first place.

“My son’s thriving was based on me getting educated and being able to utilize those services. Had I not had the training, I would not have known to go to the Regional Center,” she said.

On Friday, November 16, she is inviting social justice nonprofits, children’s rights, and autism advocacy organizations to attend the Special Needs Network train the trainer event. The free event will be held at the Fontana Foundation of Hope, located at 16730 Arrow Blvd. in Fontana from 9:00 a.m. to 5:00 p.m.

This year, her organization has expanded their reach to train nonprofits and those who are working directly with parents. She is specifically
focused on getting resources to African American families.

She said that Black parents are not accessing available IEP services at the Regional Center services as they should.

Lee’s organization is supported by grants available through the State Department of Developmental Services, which funds all Regional Centers to help close a long-standing gap in access for Black families and children.

Through her program, she trains on effective ways to reach parents with information about navigating the complicated governmental process of accessing IEP services. Many parents also do not know their rights, even though the services are available for their disabled children.

She said that educational equity continues to be a big local concern for several organizations, and African American students face a number of other health issues. Her training tries to link parents to better access to Regional Center services and strengthen parental engagement in education.

Kentucky - Sheriff’s Office To Pay For Handcuffing Students With Special Needs
By Valarie Honeycutt Spears, Lexington Herald-Leader, November 7, 2018

The Kenton County Sheriff’s Office has agreed to pay more than $337,000 “for the painful and unconstitutional handcuffing of elementary school students with disabilities,” an ACLU disability attorney said.The children “were so small that the deputy sheriff locked the handcuffs around the children’s biceps, forcing their hands behind their backs,” Susan Mizner wrote in announcing the recent settlement.

The plaintiffs suing through their mothers were two elementary school children with disabilities who were handcuffed by a deputy sheriff school resource officer while attending schools within the Covington Independent Public School District in Covington, according to court records.

A video of a handcuffed boy identified as “S.R.” drew national attention.

The lawsuit was filed in August 2015 by the Children’s Law Center, the law firm of Dinsmore & Shohl, and the American Civil Liberties Union, and the case prompted a U.S. Department of Justice investigation into the school district’s disciplinary practices.

The children who were handcuffed had repeated nightmares, bed-wetting incidents and fear of leaving their mothers, the ACLU said. The families moved so the students wouldn’t have to attend the schools.

Direct Support Professionals:
New Jersey - Direct Support Professionals (DSPs) Are Not Minimum Wage Workers
By Valerie Sellers, North Jersey Record, November 7, 2018
New Jersey lawmakers may soon begin debate on raising the state’s minimum wage to $15 per hour. As this process unfolds, it is critical lawmakers recognize that DSPs are not minimum wage workers. They are skilled professionals who provide the essential hands-on supports that enable more than 30,000 New Jersey residents with intellectual and developmental disabilities (I/DD) to live as integrated members of communities across the Garden State. They do more and deserve to earn more than minimum wage.

DSPs must complete extensive training and continuing education to attain the knowledge needed to support the diverse physical and intellectual needs of individuals with I/DD. They ensure individuals live active and engaged lives and are included in their communities at every level. To achieve community inclusion, DSP’s oversee and administer essential behavioral and medical care, comply with complex regulations and reporting requirements, and serve as advocates, companions and supportive caregivers and mentors.

The disparity between the specialized skill sets required to be a DSP and low compensation is already fueling a critical shortage of qualified direct care workers in New Jersey. The average starting wage of a DSP is only $11 per hour ($2.40 above
minimum wage) forcing most DSPs to work multiple jobs and/or rely on public assistance just to make ends meet. The lack of compensation is contributing to 44 percent turnover and 20 percent vacancy rates in the field -- costing taxpayers thousands in overtime and lost training. Worse, the revolving door of DSPs, if not addressed, will jeopardize the health and safety of individuals with I/DD. It’s already taking a financial toll on family members who may be forced to miss work to care for their loved one, let alone the emotional stress of dealing with ever-changing staff.

The Coalition for a DSP Living Wage -- comprised of over 1,000 individuals with I/DD, their family members, DSPs and organizations that serve and advocate for people with I/DD—is grateful to the Governor and Legislature for investing in a small wage increase for DSPs in the state budget adopted in June. However, this was just a first step. Lawmakers must remain committed to bringing DSP wages in line with the responsibility and skill required for the job.

Michigan - Direct Care Worker Staffing Crisis
By Jill Barker, The DD News Blog, October 27, 2018

Michigan’s Community Mental Health system serves people with intellectual and developmental disabilities, mental illness and substance use disorders. Crain's Detroit Business featured an article on 10/21/18 on the "Staffing Crisis of direct care mental health workers faces clients, families" by Jay Greene. The article covers a Crain’s health summit panel that was chaired by Robert Stein, the general counsel for the Michigan Assisted Living Association (MALA). MALA represents providers of assisted living and similar services including mental health services to people with developmental and other disabilities. [note: direct care workers are also known as Direct Support Professional or DSPs.]

According to Stein, “We have a real crisis with support services to people with disabilities…Wage levels are not competitive with retail companies, fast food restaurants and others. The funding levels have been constrained for many years.”

A MALA survey found “the average turnover rate for agencies providing staff is 37 percent, the starting wage is $10.46 per hour and the average number of open positions for full-time staff is 12 percent, 20 percent for part-time staff.”

Although the legislature “approved $64 million in additional funding in the fiscal 2018 budget to increase the average hourly rate by 50 cents..”, the panel characterized this as a “drop in the bucket”.

The article quotes Robert White, a parent advocate who has two adult sons with autism, as commenting that "Paying [direct service professional] $2 above the minimum wage (of $10 per hour) prevents more people from leaving the system. …We also need a supplemental budget in the lame duck session and future budgets to come [that] must have non-negotiated budget items. We can't kick the can down the road. It is an infrastructure requirement, a civil and constitutional right to have these services like good roads, good education and clean water to drink."

Special Education:
Texas - Court Upholds $33 Million Penalty For Underfunding Special Education
By Alejandra Matos, Houston Chronicle, November 8, 2018
Texas will likely have to give up $33.3 million in federal special education funds after the 5th U.S. Circuit Court of Appeals found that the state violated a federal rule.States are prohibited by federal law from reducing funding for special education services. If states decide to reduce funding, the U.S. Department of Education reduces the amount of federal aid by the same amount. In 2012, Texas reduced its special education budget by $33 million, so the federal government withheld $33 million as a penalty.

The law is designed to prevent states from shifting more of the financial burden of special education to the federal government. Still, Texas fought the Department of Education’s decision to withhold the funding, arguing that the costs of providing special education services had gone down, so it allocated less money that year.
In a 13-page ruling released Wednesday, a three-judge panel called the state's argument "unpersuasive," and questioned the state's method for allocating special education funding. The federal government has the option to collect the $33 million penalty in one chunk or spread it out over several years. The penalty is about 3 percent of Texas' annual $1 billion federal special education grant, according to TEA officials who said penalty would have minimal impact on special education programs. The Texas Education Agency declined to comment, and it's unclear if the state will appeal the ruling. The Texas Attorney General did not immediately return a request for comment.

Texas - TX may have again illegally reduced Special Education Funding
By Aliyya Swaby, The Texas Tribune, November 8, 2018
Disability rights advocates have dug up documents appearing to show Texas spent $41.6 million less on kids with disabilities in 2017 than the year before, raising the prospect of yet another federal financial penalty.

The day after the federal 5th Circuit Court of Appeals ruled against Texas for spending tens of millions of dollars less than it was supposed to on kids with disabilities in 2012, advocates have dug up documents appearing to show Texas did the same thing in 2017 — raising the prospect it could get hit with even more penalties.

For months, Texas has battled with the U.S. Department of Education over how to interpret a 1997 federal statute prohibiting states from reducing their funding for kids with disabilities from year to year. Appeals court judges on Wednesday effectively upheld the federal government's
interpretation — and its decision to penalize Texas for the $33.3 million it underspent six years ago.

[A]dvocates say they have found evidence of that in a more recent state application for federal special education funding. In that May application, the Texas Education Agency acknowledges spending $41.6 million less in 2017 than in 2016 — meaning the federal government might be able to withhold that amount in the future. The application was signed just a week before a federal administrative law judge ruled against Texas on its 2012 spending — the same case that made its way to the 5th Circuit this week.

New York - In New York City Schools, 40,000 Students aren’t getting Required Special Education Services
By Alex Zimmerman, Chalkbeat, November 2, 2018
A growing share of city students with disabilities received the services they were entitled to last year, according to new data released Friday by the education department — though almost a quarter of special education students only received a fraction of the help they were owed.

Last school year, just over 78 percent of students received all of the supports required by their individual learning plans, which can include services such as counseling or physical or behavioral therapy. That represents an increase from the 2016-17 school year, when 73 percent of students received all mandated services.

But nearly 40,000 special education students — or 22 percent of all students classified as having disabilities — received only part of the interventions they were entitled to or did not receive any extra support whatsoever.
Kim Sweet, executive director of Advocates for Children, a non-profit that works on behalf of students with disabilities, wrote that “while the data show incremental improvements” — the fact that
many students are left without services is alarming.

“Given the 40-point gap in reading proficiency between students with disabilities and their nondisabled peers, it is essential that the DOE ensure students with disabilities receive the instruction they need,” Sweet said.

Friday’s report marks the fourth time the city has released comprehensive data on how well the city is serving its roughly 224,000 students with special needs — a population larger than Houston’s entire public school system. But, as in the past, it is difficult to know whether the data accurately reflect the reality inside schools. Due to major flaws with the city’s special education tracking system, which is notoriously glitchy and has sparked litigation, officials have warned the data may not be completely reliable.

Other National News:
Movement to Replace Guardianship Appears Based on Little Research
By Dave Kassel, The COFAR Blog, November 7, 2018

A juggernaut of support has been building in Massachusetts and around the country to replace guardians of persons with developmental disabilities with more informal “support networks” of advisors.

Yet, the growing movement behind “Supported Decision Making” (SDM) appears to be primarily ideological, and little research appears to have been done on the impact of SDM on disabled individuals and their families.

Under SDM, individual guardians are replaced by teams or “network supporters,” who enter into written agreements with disabled individuals to “help them make decisions” about their care, finances, living arrangements and other areas.

Proponents of SDM claim that it restores the right of disabled and elderly persons who are under guardianship to make their own life decisions with help, if needed, from networks of supporters. That right has been overly curtailed by guardians, the SDM proponents maintain.

Even the United Nations Convention on the Rights of Persons with Disabilities included language in 2008 “that embraces supported decision-making and which is seen by some as requiring nations to adopt supported decision-making mechanisms,” according to a 2013 article on SDM in the Penn State Law Review.

Still, not everyone is convinced that all guardianships should be terminated, or that they should be replaced by SDM. As that same law journal article by Nina A. Kohn, Jeremy A. Blumenthal, and Amy T. Campbell, noted, “…despite much rhetoric touting its (SDM’s) advantages, little is known about how supported decision-making processes operate or about the outcomes of those processes.”

Without more information, the 2013 article stated:

"…it is impossible to know whether supported decision-making actually empowers persons with cognitive and intellectual disabilities. Furthermore, there is reason to be concerned that supported decision-making might actually have the opposite effect, disempowering such individuals or making them more vulnerable to manipulation, coercion, or abuse."

Music Therapy Yields Gains For Children With Autism
By Michelle Diament, Disability Scoop, November 6, 2018

Incorporating singing and other music-based activities in therapy sessions can make a big impact for kids with autism, new research suggests, boosting communication and other factors.
Children on the spectrum who participated in one-on-one therapy that included music outpaced those who attended similar sessions without the music component, according to findings published recently in the journal Translational Psychiatry.

Researchers looked at 51 kids with autism ages 6 to 12 who all received eight to 12 weeks of intervention with a therapist that centered on reciprocal interaction. Activities like singing and playing instruments were part of the sessions for 26 of the children. Therapy sessions for the other kids included only nonmusical play activities.

Parents completed questionnaires about their children’s social communication skills and symptom severity as well as their family’s quality of life before and after the intervention. In addition, the kids were given MRI scans to assess their brain activity.

While symptom severity remained unchanged in the all of the children following the sessions, parents of those whose therapy included music reported gains in their children’s social communication and their family’s quality of life. Results from the MRI scans suggested that the children may have seen changes in brain connectivity as a result of the music therapy, the study found.

Recent Natural Disasters Trigger Complaints From Disability Groups
By Courtney Perkes, Disability Scoop, November 6, 2018
After a spate of recent natural disasters, some advocates are expressing alarm that federal emergency response efforts are failing to protect the well-being and civil rights of people with disabilities, including by sending them unnecessarily to nursing homes.

The national disability rights group ADAPT recently sent a letter to the Federal Emergency Management Agency, criticizing the release earlier this year of a strategic plan without “preparedness, planning or response elements” specifically for people with disabilities, unlike past plans that addressed disability rights and accessibility.

Meanwhile, the Partnership for Inclusive Disaster Strategies, a national coalition, has filed a civil
rights complaint naming FEMA and three other federal agencies for failure to provide equal access to shelters.

During recent East Coast hurricanes, advocates say that shelters have lacked reasonable accommodations, including wheelchair accessible restrooms. In some cases, evacuees were sent to nursing homes if they couldn’t return to their previous community residences because of damage when shelters shut down.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”    - Mother Teresa
VOR Supports H.R. 6611

This bill would define individuals with intellectual and developmental disabilities as a medically underserved population, and appropriate more funds to their care. The bill will expand and improve health care and dental services for people with I/DD. Stay tuned for more information on this bill.

VOR Supports H.R. 3325

Advancing Care for Exceptional Kids Act or the ACE Kids Act

This bill amends title XIX (Medicaid) of the Social Security Act to establish a state Medicaid option to provide for medical assistance with respect to coordinated care provided through a health home (i.e., a designated provider or team of health-care professionals) for children with medically complex conditions. A state shall make payments for such health-home services regardless of whether they are provided through a fee-for-service or managed-care system. For an initial period of eight fiscal-year quarters, the federal matching rate applicable to such payments shall be increased by 20 percentage points, not to exceed 90%.

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VOR's 2019

June 8 - 12, 2019
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