May 17, 2019
Amended Budget Proposal Saves Special Olympics – But Not All the Other Disability Program Cuts.
Washington, DC – This week, President Trump sent to Congress an amended budget proposal which included money for Special Olympics, reversing an attempt to cut the funding. However, many other cuts that could impact the lives of people with intellectual and developmental disabilities (I/DD) are still in the President’s budget request.
“Funding for the important work of Special Olympics has broad support in Congress and amongst the public. But so does funding for a host of other programs that support people with intellectual and developmental disabilities to thrive in the community.
“It’s not too late for the President to go further and reverse course on his proposal to cut Medicaid, the core program providing access to health care and home and community-based services for people with disabilities. Or his plan to impose work requirements to be eligible for the program. Or any of the other cuts proposed that could impact access to job training, maternal and child health, or caregiver support, to name a few.
“What we invest in reflects our values as a society. There’s a lot at stake for people with disabilities in the budget process in Washington, and there’s still time to make the right investments that keep up the progress we’ve made in access to services and supports across the lifespan, “said Peter Berns, CEO, The Arc.
The Arc is particularly concerned about the proposed cuts to Medicaid, which come in the same form as those included in the 2017 proposals to repeal the Affordable Care Act (ACA) and cut and cap the Medicaid program. Congress rejected this in 2017, but the Administration proposed budget includes replacing both the Medicaid expansion and ACA subsidies with a block grant, and converting the rest of Medicaid into a per capita cap which would deeply cut the program and cap the amount of funding available. The end result of these proposals being put in place would be less money for states, restrictions on eligibility, cuts to services, and growing waiting lists.
The Arc has compiled information about the Administration’s budget request as it pertains to programs that provide services and supports for people with I/DD and their families.
The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 600 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.
March 29, 2019
Special Olympics Saved – But What About All the Other Disability Program Cuts in President’s Budget?
Washington, DC – It’s budget season in Washington, DC, and there’s a lot at stake in the proposals for people with intellectual and developmental disabilities (I/DD). In the last few years, the Administration has consistently proposed cuts to programs that impact people with I/DD and their families. From home and community-based services in Medicaid, to imposing work requirements, to a planned and then scrapped attempt to slash funding for Special Olympics, this year’s budget request, if Congress were to enact legislation reflecting the President’s priorities, would be harmful to the lives of people with I/DD.
“If the Administration’s original budget request could cut $18 million from Special Olympics, which provides longstanding community benefit for thousands of people with disabilities, their families, and volunteers, then you should be asking yourself – what else is lurking in these proposals?
“Unfortunately, it’s the tip of the iceberg. The President’s budget proposes $2.7 trillion in cuts over 10 years. There are deep cuts to Medicaid on the table – the core program providing access to health care and home and community-based services for people with disabilities. The cuts come in the same form as those included in the 2017 proposals to repeal the Affordable Care Act (ACA) and cut and cap the Medicaid program. Congress rejected this in 2017, but the Administration proposed budget includes replacing both the Medicaid expansion and ACA subsidies with a block grant, and converting the rest of Medicaid into a per capita cap which would deeply cut the program and cap the amount of funding available. The end result of these proposals being put in place would be less money for states, restrictions on eligibility, cuts to services, and growing waiting lists.
“And once again, the budget proposes work requirements for Medicaid. Applying this policy would have devastating effects on health care coverage — particularly for people with complex health care needs, and likely many people with disabilities.
“What we invest in says a lot about our county and our values. We’ve come a long way in expanding disability rights and including people with disabilities in all aspects of the community, across the lifespan. We won’t go backwards, and this budget request takes us in the wrong direction,” said Peter Berns, CEO, The Arc.
The Arc has compiled information about the Administration’s budget request as it pertains to programs that provide services and supports for people with I/DD and their families.
The Arc advocates for and serves people wit¬¬h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.
March 22, 2019
Tomorrow the Affordable Care Act (ACA) will turn 9 years old, giving everyone who cares about access to quality, affordable health care plenty to celebrate even as we work to achieve universal coverage. Because of the ACA 20 million people (800,000 in New Jersey) have gained access to health insurance that guarantees coverage for essential health benefits like no-cost preventative services, maternity care, mental health and treatment for substance use disorders. 130 million are now protected from discrimination because of pre-existing condition, gender or sexual orientation.
The ACA has survived countless attacks in Congress, the states, and the courts since its passage in 2010, including the Trump administration’s relentless efforts to repeal, weaken, and dismantle the law piece by piece over the past two years.
While ACA opponents claim to care about protecting people with pre-existing conditions, tackling the opioid crisis that is destroying millions of lives and making health care more affordable, their actions tell a different story.
Today, New Jersey took another important step in that fight. Governor Murphy announced New Jersey will establish a state exchange and proposed passing comprehensive legislation that will guarantee ACA benefits and protections to all New Jerseyans regardless of what happens in Washington. These important steps will help us as we look to ways to expand access to quality, affordable health care to all residents of our State.
This is why it is so important that we worked so hard to defeat ACA repeal in 2017, then worked to elect a Governor who is actively trying to protect our care, and then worked to turn New Jersey blue in 2018. Elections matter. Your activism matters. The ACA is 9 today because of you and New Jersey has taken another step toward universal coverage.
March 7/2019
Governor Boosts Care for Co-Occurring Developmental Disabilities & Mental Health Conditions– F2020
(TRENTON) – Governor Phil Murphy has announced $22.5 million in proposed new investments to care for individuals with developmental disabilities, including new funding for individuals diagnosed with both developmental disabilities and mental health conditions.
“Our budget will provide critical resources to allow individuals with both developmental disabilities and mental health challenges to thrive in their communities,” Governor Murphy said during his Tuesday Budget Address.
“The Murphy Administration is committed to improved programs and services for individuals dually diagnosed with developmental disabilities and mental health concerns,” said Human Services Commissioner Carole Johnson. “These individuals represent a particularly vulnerable population and require comprehensive coordinated treatment and support to help them live as independently as possible in the community. New innovations are crucial and with this initiative we’re increasing our capacity to care for these individuals and give them the services they need.”
The new funding for individuals with developmental disabilities and mental health conditions would include $7 million proposed in Governor Murphy’s budget for next fiscal year. This funding would help garner $2.5 million in matching federal funds, for a total of $9.5 million.
The money would be used to:
• Double capacity of the Division of Developmental Disabilities community-based emergency beds by adding 20 new beds across the state, which can reduce the need for hospitalizations and get people in crisis home sooner;
• Develop a Medicaid Behavioral Health Home pilot program that would invest in building the capacity of health care providers to serve individuals with developmental disabilities and mental health issues; and
• Conduct a statewide review of in-patient stabilization services and funding mechanisms.
The Governor’s budget plan also calls for an additional $15.5 million in state funding to continue New Jersey’s emphasis on home and community-based services.
“Taken as a whole, these improvements represent an expansive effort to ensure the best possible care for individuals with intellectual and developmental disabilities,” said Human Services Deputy Commissioner Sarah Adelman. “The Murphy Administration is strongly committed to supporting the needs of individuals with developmental disabilities and their families and caregivers”
“Those with both developmental and intellectual disabilities often require specialized care that addresses their unique needs,” said Senator Joe Vitale (D-Middlesex), chair of the Senate Health, Human Services and Senior Citizens Committee. “This is a public health issue that deserves more attention and additional support. These funds will be put to good use to help those with dual diagnoses meet the challenges they face and help their families to provide the care they need. They should not be neglected as we work to treat mental illness in all its forms.”
“Expanding access to high quality care for individuals with mental health conditions and developmental disabilities will immeasurably improve the quality of life for them and their families,” said Assemblywoman Joann Downey (D-Monmouth), chair of the Assembly Human Services Committee. “These improvements will dedicate much-needed resources to the comprehensive programs and treatment these individuals need to meet the unique obstacles that come with these conditions. I fully support all efforts to extend a helping hand to these New Jersey residents and their loved ones.”
The budget plans were welcomed by parents and advocates.
“During my 20 year journey as a parent, advocate and healthcare provider, I have come to realize that there is no silver bullet that will fix the system. Instead, developing innovative, targeted programs like what the Murphy administration is proposing is what is needed,” said Stephanie Pratico, a Hamilton mother of two young adults with intellectual and developmental disabilities who was a guest of First Lady Tammy Murphy at Tuesday’s Budget Address by the governor. She is also Program Manager for the NJ Transition to Adult Comprehensive Care Program – a program for intellectually and developmentally disabled young adults – at the Children’s Hospital of Philadelphia. “Sadly, innovation, healthcare and government are rarely used in the same sentence in a positive light. However, if we are to improve the quality of care for this vulnerable population, whose needs are complex, the private sector must partner with government to break the tired cookie-cutter molds that have languished in healthcare for too long. Embracing a model where new ideas are encouraged, tested and refined will accelerate the creation of new methods of delivering efficient, quality care that is tailored to the developmental disability population.”
“The Arc of New Jersey is grateful to the Governor for putting needed resources into the service delivery system that enables thousands of individuals with intellectual and developmental disabilities to live integrated lives in the community,” said Thomas Baffuto, executive director of The Arc of New Jersey. “Specifically, we applaud the addition of new funding to address the needs to those with I/DD and mental health needs. This segment of the population often requires specialized services and attention, and this new funding will help provide the critical supports in response to the unique challenges facing individuals with dual diagnosis and their families.”
“The innovation of a Medicaid Behavioral Health Home pilot program for people living with developmental disabilities and co-occurring mental health disorders and the continued emphasis on home and community-based services demonstrates Governor Murphy’s compassionate and innovative investment in building New Jersey’s capacity to support and include individuals with disabilities and their families in our communities,” said Deborah M. Spitalnik, PhD, Executive Director of The Boggs Center on Developmental Disabilities at Rutgers Robert Wood Johnson Medical School and chairwoman of New Jersey’s Medical Assistance Advisory Council (MAAC).
January 28, 2019
The Arc Responds to Three Month Extension of Money Follows the Person Passing Congress
Posted on January 28, 2019 by The Arc
Last week, the Medicaid Extenders Act of 2019 was signed by President Trump. A three-month funding extension for Money Follows the Person (MFP) was included in this bill. This program moves people with disabilities from institutions into the community by paying for programs not normally covered by Medicaid such as employment and housing services.
“Passage of this bill means individuals with disabilities who have been waiting to transition while funding for the MFP program was in danger, have the opportunity to move out of institutional settings and into the community. If the funding bill did not pass, MFP funds would have run out across the country. This is not only an investment in community-based services, but in the civil rights of people with intellectual and developmental disabilities.
“It is a powerful testament to the value of this program that this legislation was passed so early this Congress, especially after the unsuccessful attempts to cut Medicaid by billions of dollars last Congress. This victory belongs to advocates nationwide who have been actively working to support people with disabilities to live in their communities. We look forward to working with leaders in Congress who supported this legislation on a strategy for longer or permanent extension of MFP.” said Peter Berns, CEO of The Arc.
January 15, 2019
Who: National ADAPT
What: Disability Community Celebrates the Reintroduction of the Disability Integration Act
Where: Capitol Visitors Center, Room SVC 202-3, Washington, DC
When: Tuesday, January 15, 2019 from 3pm to 4pm
Disability Community Celebrates the Reintroduction of the Disability Integration Act
Members of Congress from both side of the aisle came together today to celebrate the re-introduction of the Disability Integration Act (DIA) at the Senate Capitol Visitors Center. The Disability Integration Act is a bill that would affirm the rights of people with disabilities and seniors to have the real choice to live in the community by requiring insurance companies that would offer institutional services to also offer those same services in the community.
“At its core, the Disability Integration Act is about one simple thing: that people with disabilities must be treated as equally as those without.” said Senate Minority Leader Schumer “People with disabilities are too often denied the choice to receive at-home care and support services. This bill ensures that would never happen again.”. The bill, which received bipartisan support in both the Senate and the House in the last Congress, was reintroduced today by Senator Schumer and Representative James Sensenbrenner.
“I am proud to re-introduce this bill, because all Americans should share in the American Dream, and that begins in the community in someone’s own home,” said Representative Sensenbrenner.
DIA has widespread support in the Disability Community. “This bill builds on the idea that the independent living movement was founded on. DIA will mean that disabled and elderly Americans no longer have to move into institutions to get the services we need to live our lives,” said Anita Cameron, the Mistress of Ceremony at today’s event. The bill ends what disabled activists have long called “the institutional bias” by requiring that any insurer offering long term supports and services must make them available in the community setting rather than only in institutions and nursing facilities.
Much of the excitement over the reintroduction comes from the feeling that DIA’s time has come. “The midterm elections changed everything. With Democrats taking over the house, there is a real opportunity to pass the bill on the House side this year” said Kelly Buckland, Executive Director of the National Council for Independent Living. “As someone who uses attendant services and has spent time in a nursing facility, I can’t begin to express how exciting it is that this is finally going to happen.” To this end, ADAPT and the broader Disability Community have called upon the House of Representatives to pass DIA before July 26th of this year.
It is not a coincidence that the celebrations and the reintroduction are taking place on January 15th, Dr. Martin Luther King Jr.’s birthday. The Disability Rights Movement has deep ties to the Civil Rights leader and has long marked this day as Freedom Day, with celebrations of the progress that has been made and direct action aimed at furthering the cause. To many in the Disability Community the DIA was made for Freedom Day, and the day the legislation finally passes will forever be known as Disability Freedom Day!
Celebrations are being held nationwide at disability rights organizations who are watching the livestream of the Reintroduction on National ADAPT’s Facebook and YouTube accounts. A reception will follow this event from 4pm to 6pm at the Capitol Visitors Center.
January 9, 2019
Sweeney Endorses Disclosure Requirements for Independent Advocacy Organizations: ‘This Is One Where We Agree’
TRENTON – Senate President Steve Sweeney announced today his support for legislation that would require independent advocacy committees to disclose their donors, bringing greater transparency to organizations that work to influence the process of government. Senator Sweeney is endorsing a bill already introduced by Senator Troy Singleton that would have so-called “527 and 501(c)4 groups” make public their sources of contributions and expenditures.
“We need to bring greater transparency and accountability to the organizations that work to influence the actions of government that have an impact on the lives of the people of New Jersey,” said Senator Sweeney. “If they are attempting to advocate for favored policies, influence the fate of legislation or direct state regulations, the public has a right to know. Full disclosure will improve the process of government and enhance public confidence.”
Senator Sweeney said that he will work with Senator Singleton to strengthen the bill by expanding the disclosure requirement to include advocacy or opposition to proposed or existing legislation or regulations, and to cover all contributions retroactive to January 1, 2018.
“I have reviewed Senator Singleton’s proposed legislation and I have also reviewed Governor Murphy’s similar call for more disclosure and transparency,” said Senator Sweeney. “While there have been areas of disagreement between the Governor and me of late, this is one area where we agree. I am going to move Senator Singleton’s bill and propose that it be strengthened to cover all contributions retroactive to January 1, 2018 and expand it to include the advocacy or opposition to proposed or existing legislation and proposed or existing regulations.”
Senator Singleton’s bill, S-1500, would revise “The New Jersey Campaign Contributions and Expenditures Reporting Act” to institute new reporting requirements for the organizations that attempt to influence the outcome of any election or the nomination, election, or defeat of anyone for state or local elective public office, for any public question, or to provide information on any candidate or public question. It would cover any organization that raises or spends $3,000 or more for this purpose and require information on each contribution and expenditure in excess of $300.
January 8, 2019
Speaker Nancy Pelosi speech before 116th Congress
Speaker Nancy Pelosi opened the 116th Congress with a speech in which she spoke about “a Congress that delivers results for the people, opening up opportunity and lifting up their lives.” She vowed that her caucus would advance the rights of the LGBTQ community and Dreamers, and that they would protect our children and the environment. But unfortunately, she said nothing about advancing the civil rights of Disabled Americans who are fighting to secure our rightful and equal place in American society.
Speaker Pelosi lauded President George H.W. Bush’s commitment to Disability Rights when she spoke of his work to pass the Americans with Disabilities Act (ADA) 28 years ago. However, she made no commitment to protect the ADA, which was threatened just last year when a dozen Democrats voted to undermine the civil rights of people with disabilities by passing the ADA Education and Reform Act in the House. It is unclear whether her failure to promise to protect our rights under the ADA was just an oversight or, in fact, a signal that Democrats may caucus with Republicans to pass a bill that would significantly weaken or repeal the ADA during this Congress.
Even more concerning, Speaker Pelosi failed to mention the Disability Integration Act (DIA), bi-partisan, bicameral civil rights legislation that would ensure elderly and Disabled Americans are no longer locked away in institutions. Speaker Pelosi praised the Little Lobbyists who came out to protect Medicaid, but didn’t support the very legislation which would allow them to grow up in a society where they could live in freedom.
Not including DIA in her first speech – in which she specifically promised to pass the Equality Act – has left people in the Disability Community wondering whether this was an oversight by her staff or a signal that House Democrats intend to turn their back on the very Disabled people who put their bodies on the line to save Obamacare and Medicaid. Many in the Disability Community hope this was simply an oversight, pointing out that last summer, then Minority Leader Pelosi stood before a crowd of over one thousand Disability Rights activists and advocates at the National Council for Independent Living Rally on the Hill and promised to do everything in her power to pass DIA. Still, this omission is a grave misstep for the newly minted Speaker.
As highlighted in her own speech, support for Disability Rights issues is found on both sides of the aisle, and the Disability Community has worked diligently to secure solid bi-partisan support for DIA. Speaker Pelosi has the opportunity to lead, not just the Democrats, but the entire House of Representatives in responding to the Disability Community’s expectation that the House pass the Disability Integration Act before July 26, 2019.
Disabled Americans have waited far too long to be freed from the institutions that lock us away. In the words of Justin Dart, we call on you, Speaker Pelosi, to Lead On!
January 7, 2019
Important Policies in Limbo as New Congress Swears-In During Partial Federal Shut Down
Congress officially swore-in its new and re-elected members for the 116th Congress on Thursday, January 3 amid a partial federal shutdown over partisan disagreement over the President’s request for funding for a wall along the U.S.-Mexico border. The start of a new Congress means that any legislation not passed by the previous Congress must be “rebooted”, in that it must be re-introduced, go through the committee process, and then be voted on by the full House and Senate all over again. This fact, combined with the shutdown starting at the end of the 115th Congress, has left legislation suspended and contingent on the outcome of negotiations to fund the government in the 116th Congress. ANCOR is dedicating this article to walking members through the various facets of the shutdown and what it means for the I/DD community.
Where the shutdown is at: With the discussion over border funding at a standstill, Congress is focused on short-term funding that will keep closed agencies open during longer negotiations. This type of short-term funding bill is known as a continuing resolution (CR). With the Democratic Party now in control, the House has passed a CR with no funding for construction of a wall which it has sent to the Republican-controlled Senate. Senate Majority Leader Mitch McConnell (R-KY) has said he will not move a bill the President does not support, though he may begin to face pressure from other GOP U.S. Senators who are interested in a deal. Other Senators are seeing opportunities to re-open broader talks on immigration reform as a way out of the impasse, though we have not seen this widely discussed so far.
I/DD supports are mostly insulated from the shutdown. As shared in a previous ANCOR Capitol Correspondence article, key areas of the federal government for I/DD supports such as the Department of Health and Human Services (HHS) are already funded through a bipartisan deal signed before the election. While nine federal departments / agencies remain to be funded and their staff are currently furloughed, they do not have an immediate impact on the maintenance of I/DD supports.
However, people with disabilities are being affected by uncertainty over other federal assistance programs. As shared in Politico Pro, “As the partial government shutdown extends into its third week, the Department of Agriculture won’t say how long it can keep paying out food stamp benefits for the nearly 39 million people who depend on them each month. The White House and House Democrats, locked in a bitter political struggle over border wall funding, have started raising alarm that the food stamp program, one of the most significant forms of aid for low-income Americans, could run out of funds in coming weeks if Congress doesn’t act — an apparent attempt by both sides to increase pressure on Congress to end the shutdown. […] But the Trump administration may in fact have more leeway to use reserve funds to keep food stamps afloat if Congress and President Donald Trump can’t reach an agreement to break the impasse, which has shuttered nine of 15 federal departments, including the Department of Agriculture, for 17 days. […] The USDA, which administers the food stamp program, has declined to answer questions about its reserves and would not provide an estimate of when the program would run out of cash.” People with disabilities are among those eligible for SNAP, othewise known as the food stamp program. ANCOR members seeking a longer read might be interested in this Washington Post article.
Furthermore, ANCOR’s priority bill temporarily renewing Money Follows the Person is in limbo, affecting individuals who wish to be in the community. ANCOR and its members advocated very heavily for Congress to renew the Money Follows the Person (MFP) program, which transitions people with disabilities and chronic conditions out of nursing homes and into the community. This advocacy led to the House passing a bill to renew MFP for three months, and Congress and the Senate both attached this MFP bill to the CR introduced in December. However, since the CR did not pass due to the shutdown standoff, it means we must start over again – either with a new CR which includes MFP renewal or as standalone legislation. Because funding negotiations are in such flux, it is unclear what path MFP will need to take, but ANCOR will keep its members informed of opportunities for action as they arise.
December 17, 2018
The Arc Responds to Food and Drug Administration’s Intent to Ban Use of Electric Shock Devices
Posted on December 17, 2018 by The Arc
Today, The Arc released the following statement in response to the Food and Drug Administration’s (FDA) announcement that it intends to ban the use of an electric shock device called Gradual Electronic Decelerator or GED. These devices are used with residents of the Judge Rotenberg Center (JRC), an institution in Massachusetts for children and adults with intellectual and developmental disabilities (I/DD) and mental health issues. The devices are worn by residents of JRC; staff members use remote controls to administer a shock to the resident wearing the device with the intent of changing the individual’s behavior. Substantial evidence exists in the FDA’s records that this practice is painful and traumatizing to the individuals who have been shocked.
“There is a well-established body of evidence proving that there are alternative methods for behavioral supports for people with disabilities and other needs that do not include excessive force, pain, and fear. The actions of the JRC remain a civil rights issue. While we are glad that the FDA has shared its intent to ban use of these electric shock devices, we urge the agency to finalize this rule as soon as possible.
“With every day that passes without this rule being finalized, the rights of people with disabilities and mental health issues will continue be violated as they endure painful abuse. The Arc won’t rest until this barbaric practice is halted and use of these devices is banned at the JRC and nationwide. We remain a resource to FDA and other administration officials as they work through implementing this ban,” said Peter Berns, CEO of The Arc.
The Arc has a long history of opposition to the use of aversive procedures, such as electric shock, deprivation, seclusion, restraint, and isolation on people with I/DD and other disabilities. For many years now, The Arc has joined other organizations raising concerns about the health, safety, and welfare of residents of the JRC, including commenting on the rule that The Arc is now requesting the FDA to finalize.
ANCOR
December 10, 2018
Dear Speaker Ryan, Minority Leader Pelosi, Majority Leader McCarthy, Minority Whip Hoyer, Chairman Walden, Ranking Member Pallone, Rep. Guthrie and Rep. Dingell:
The American Network of Community Options and Resources (ANCOR) strongly supports passing H.R. 7217 to reauthorize the Money Follows the Person (MFP) Medicaid demonstration program. Reauthorizing MFP is our top legislative priority in the Lame Duck session. Beyond the potential harms to persons with disabilities and older adults that would occur if MFP was not reauthorized, we also anticipate disruption, confusion, and new administrative burdens on states.
ANCOR is a national, nonprofit trade association representing more than 1,400 private community providers of services to people with disabilities and 55 state associations. Our members provide vital and intensive services from assisting with daily life activities to providing support and access to the greater community. Combined, we service over one million individuals with disabilities and work to shape policy, share solutions and strengthen the community.
As the nation mourns the loss of President George H.W. Bush, we remember him for championing the Americans with Disabilities Act (ADA) to end, in his words, “the shameful wall of exclusion” so that
“every man, woman, and child with a disability can now pass through once-closed doors into a bright new era of equality, independence, and freedom.”
While Congress has made great bipartisan strides in ensuring persons with disabilities can be integrated into their communities, systematic biases still exist that favor more costly institutional care over home and community-based services (HCBS). MFP follows in that proud history of passing bipartisan legislation to ensure that individuals with disabilities are able to live in the setting of their choice.
First authorized in the Deficit Reduction Act of 2005, with strong bipartisan support and signed into law by President George W. Bush, the MFP program has helped more than 88,000 older adults (CMS, 2018) and people with disabilities – nearly one-third of them older adults — transition out of nursing homes and other institutional settings back to living in their communities
MFP has also enabled at least 43 states and the District of Columbia to develop the needed infrastructure to enhance people’s access to home and community-based services (HCBS), while helping states shift more of their resources to HCBS and reduce expenditures on more expensive institutional services.
According to CMS, 12 states have already exhausted their allotted MFP funding and the remaining state MFP programs will do so as well by December 31, 2018. As a result, states are transitioning fewer individuals and the progress we have made due to MFP in supporting people with disabilities in their communities is at risk, including compromised quality of life and health outcomes for beneficiaries, key staff layoffs at the state and provider levels, and loss of badly needed state Medicaid infrastructure.
We thank you and your staff for the bipartisan process to develop and pass this legislation, which will remove barriers for individuals and states, enhance accountability, and contribute to sharing of best practices across states. This will assist states with achieving cost-efficiencies in their Medicaid programs while simultaneously enhancing opportunities for individuals to live independent and self-directed lives in the community.
If you would like more information or to discuss further, please feel free to contact me at smeek@ancor.org or (202) 258-4462. We look forward to working with you on swift passage of this critical legislation.
Sincerely,
Sarah Meek, MSW
Director of Legislative Affairs
American Network of Community Options and Resources
NJ too expensive: Homelessness rises by 9 percent
A new report finds homelessness rose sharply in the Garden State last year.
According to just-released data compiled by the U.S. Department of Housing and Urban Development, there are 9,303 men, women and children who are homeless in New Jersey this year, which is a 9 percent increase from 2017.
Previous HUD homeless counts had indicated Jersey’s homeless population had recently been trending downward.
Experts believe more and more New Jerseyans are becoming homeless, and they insist the actual number of state residents who don’t have a place to call home is considerably higher than what is being reported.
“There are a lot of flaws in the way the count is done,” said Kate Leahy, the director of operations and communications for the New Jersey Coalition to End Homelessness.
She explained the count is merely a snapshot of how many people are observed to be homeless during one day and one night of the year, and most of them are in shelters, so the total is not accurate.
“People are staying with other people on couches, they might go to a shelter for one night and then stay with someone else for another night. They’re not necessarily as visible on the street,” she said.
According to the HUD point-in-time count, Essex County has the highest number of homeless in New Jersey with 2,229, followed by Hudson and Burlington counties.
Middlesex county ranks 4th highest in the state with 596 homeless residents, Monmouth county is 12th highest with a total of 335 homeless individuals and Ocean is 13th with 311 homeless.
Salem has the lowest homeless population in the state with 47.
“It’s harder and harder to make ends meet in New Jersey; housing gets less and less affordable; the opioid epidemic is growing,” Leahy said. “While the unemployment rate is going down, the amount of money people are making is not enough to afford the very expensive housing in most of our state.”
She said in many parts of the state we may not be aware of homelessness as an issue because we don’t see people lying on the sidewalk or sleeping in cardboard boxes like on the streets of New York or Philadelphia.
She said those being paid minimum wage have to work three full-time jobs to be able to afford a home — “and that’s just not doable in many cases.”
Leahy added you might not imagine anyone is homeless in your community but “in every community in New Jersey there are individuals and families experiencing homelessness, so there’s a good chance there are people right in your area.”
Connie Mercer, the founder and executive director of HomeFront, an organization that takes care of Mercer County’s homeless families, says on any given night they’re providing shelter to about 450 people — and it’s been that way for years.
She said while the official HUD count includes people in shelters, it may miss individuals sleeping on benches in the back of train stations, for example.
“They’re the folks that are sleeping in their cars, they are the people that are in tents, even in tent cities,” she said.
Mercer said the official total of 9,300 homeless residents is way too low.
“Some people in the field say you have to multiply that by four to come up with anything realistic.”
The Public Charge Rule
What is the Public Charge rule?
On October 10, the Department of Homeland Security announced the “public charge” rule. This rule allows the U.S. to keep out people who may become a “public charge.” Someone is called a “public charge” if the government thinks you might depend on government benefits to meet your needs. Someone who is called a “public charge” will be discriminated against if they try to enter the U.S. (get a visa) or get a green card (become a permanent resident).
The proposed rule is unfair, dangerous, and blatantly discriminatory. The rule would exclude people from this country simply because they have a disability.
The U.S. has already had a public charge rule for a long time. The new rule will make things much worse. Under the old rule, someone was only considered a public charge if they used cash benefits, like social security or TANF, or if they lived in an institution. The new rule uses a much bigger list of programs and benefits, and it also looks at other things like someone’s health and income.
The Rule Discourages the Use of Important Programs and Benefits
The new rule will discourage families from using important services for fear of harming their immigration status. People with disabilities and our families often need to use government benefits in order to stay fed, housed, and healthy. Under the new rule, using–or even just applying for–these benefits will count against us. Some of the programs and benefits that will count against us under this new rule are:
- Medicaid
- Food stamps, or SNAP
- Medicare Part D assistance
- Section 8 housing assistance
- Children’s Health Insurance Program, or CHIP (they are still deciding whether to include this program)The Rule is An Attack on MedicaidThis creates an unfair choice for people with disabilities and our families. Medicaid is the only source for community living supports for people with disabilities. Community services simply aren’t available under private insurance. This rule will force immigrant families to choose between surviving without needed community services or being denied entry into this country just because their family member has a disability and might need services.The proposed rule directly discriminates against people with disabilities and chronic health conditions. In addition to benefits, the rule looks at a person’s health to decide if they will become a public charge. If someone has certain medical conditions, that counts against them. If someone doesn’t have a medical condition or a disability, the rule says that is a “positive factor.” This is unfair and discriminatory to people with disabilities and chronic health conditions.
- The rule specially calls out people with the “most expensive health conditions,” including:
- The Rule Discriminates Against People with Disabilities
- The public charge rule is another attack on the basic services people with disabilities receive through Medicaid. The new rule includes the Medicaid-funded services that help people with disabilities stay in our homes, work, go to school, and live in our communities. These services are sometimes called waiver services, personal care services, nursing services, respite, intensive mental health services, and employment supports.
- In addition, the rule will also look at someone’s income. If someone or their family is lowincome, that will count against them.
- Heart disease
- Cancer
- Trauma
- Mental health conditionsIn other words, the proposed rule would exclude people with disabilities simply because they have a disability. If the new rule is put into practice, it will hurt many immigrants and immigrant families, including people with disabilities. But there is still time. For the next 60 days, the Department of Homeland Security is taking comments on the rule. Anyone can comment on the rule, and the government is required to read and respond to the comments. It is critical that the disability community sends in as many comments as possible explaining why this rule is dangerous and discriminatory and why it should not be put into practice. If we all speak up, we can keep this rule from being implemented.
- For more information, please visit https://medicaid.publicrep.org/feature/public-charge/ and https://protectingimmigrantfamilies.org/.
- The Rule Isn’t Final Yet
- The rule also looks at whether or not a person can obtain private health insurance to pay for the medical costs the government thinks they will have because of their chronic health condition or disability. If someone doesn’t have health insurance, that counts against them. But because many important community services are only available through Medicaid and are not covered by private insurance, many people with disabilities won’t pass this test.
- In other words, the proposed rule would exclude people with disabilities simply because they have a disability. The Rule Isn’t Final YetIf the new rule is put into practice, it will hurt many immigrants and immigrant families, including people with disabilities. But there is still time. For the next 60 days, the Department of Homeland Security is taking comments on the rule. Anyone can comment on the rule, and the government is required to read and respond to the comments. It is critical that the disability community sends in as many comments as possible explaining why this rule is dangerous and discriminatory and why it should not be put into practice. If we all speak up, we can keep this rule from being implemented.For more information, please visit https://medicaid.publicrep.org/feature/public-charge/ and https://protectingimmigrantfamilies.org/.
Judge Brett Kavanaugh’s Nomination
- AUCD
The Association of University Centers on Disabilities (AUCD) is a national organization that supports the right of self-determination for individuals with intellectual and other disabilities. After carefully reviewing opinions that fail to affirm this right and jeopardize access to healthcare for people with disabilities, AUCD has decided to oppose the nomination of Judge Brett Kavanaugh to serve on the U.S. Supreme Court. “The appointment of Judge Kavanaugh threatens civil rights protections for people with disabilities including access to healthcare,” said Andrew Imparato, Executive Director of AUCD. “Judge Kavanaugh’s record on the D.C. Circuit has failed to support the critical principle of self-determination for people with intellectual disabilities and the importance of access to healthcare for millions of Americans with disabilities.” Two cases in Judge Kavanaugh’s record form the primary basis for our concerns.
In the 2007 ruling DOE v. District of Columbia and Mental Retardation and Developmental Disabilities Administration, Judge Kavanaugh ruled that people with intellectual disabilities could be presumed incompetent to make medical decisions:
Judge Kavanaugh overruled multiple district court orders that had given people with intellectual disabilities who had been deemed not legally competent the right to have input into whether or not they would be subject to elective surgery. The lower courts had affirmed that a legally incompetent individual may be capable of expressing a choice or preference regarding medical treatment. The court therefore ordered the District of Columbia to make “documented reasonable efforts to communicate” with patients “regarding their wishes.” If communication was unsuccessful and a patient’s wishes couldn’t be determined, however, the lower court had allowed the government to determine the patient’s “best interests” by considering the “totality of the circumstances.”
In his written decision, Judge Kavanaugh neither acknowledged nor appeared to consider that a person could have an intellectual disability but still might understand the nature of a surgery or have a right to know, think about, or decide whether to undergo a procedure. Making an effort to communicate was viewed as an unnecessary standard to apply to the government when it wanted to perform surgery on a person with an intellectual disability because, in Judge Kavanaugh’s words, they were “by definition” incompetent so their input was not relevant to the decision. In his view, the Constitution would not protect people with intellectual disabilities from a state agency policy that allowed non-emergency elective surgery without informing them or making any effort to ascertain whether they wanted it. Liz Weintraub, Senior Advocacy Specialist at AUCD, commented on the ruling, “As a woman with an intellectual disability, I know what it is like for other people to try to make decisions about my life, my relationships, and my body. Judge Kavanaugh seems to think people like me don’t deserve a say in our own healthcare, and that to me is dangerous, discriminatory, and shows he doesn’t really understand the idea of ‘nothing about us without us’.”
Judge Kavanaugh’s dissent in Seven-Sky v. Holder illustrates his belief that the Affordable Care Act is unconstitutional:
Judge Kavanaugh’s dissent from the D.C. Circuit Court ruling that upheld the Affordable Care Act reflects his view that the law is unconstitutional and beyond the power of Congress. He rejected all of the government’s defenses of the ACA, concluding specifically that the individual mandate to purchase health insurance could not be justified under either the Taxation or Spending Clauses of the Constitution. Judge Kavanaugh’s rationale for overturning on the ACA was so extensive that it formed the basis of the four-vote dissent that would have struck down the ACA at the Supreme Court. “The Affordable Care Act is what stopped insurance companies from excluding people with pre-existing conditions, making it foundational to the lives of people with disabilities. If Judge Kavanaugh leads the Supreme Court to overturn the ACA, people with disabilities will lose access to health insurance and affordable medical care,” says AUCD Executive Director Andrew Imparato.
2. Disability Rights Groups React to Premature Scheduling of Brett Kavanaugh Confirmation Hearing
Washington, DC, August 13, 2018–Today, the Bazelon Center for Mental Health Law, the Center for Public Representation, and the Autistic Self Advocacy Network issued the following statement responding to the announcement that the Senate Judiciary Committee will proceed with a confirmation hearing for Supreme Court nominee Brett Kavanaugh on September 4, 2018:
“The confirmation of a Supreme Court Justice will affect the lives of all Americans, including those with disabilities, for many years to come. It is critical that the Senate exercise its constitutional responsibility to provide advice and consent in the nomination process. Yesterday’s decision to schedule hearings when only a miniscule fraction of the relevant documents concerning Judge Kavanaugh’s White House service under President George W. Bush have been produced–and the National Archives has indicated that its review of these documents will not be complete until October–makes a mockery of the process for selecting the life-tenured justices of our nation’s highest court. The scheduling of a hearing with so little transparency is a far cry from how any Supreme Court confirmation process has been conducted in recent memory, and would prevent a meaningful selection process. The Senate and the American people are entitled to understand Judge Kavanaugh’s views on important and controversial issues on which he worked during his White House tenure, such as proposals to convert the Medicaid program into a block grant. People with disabilities have a great deal at stake with this nomination, including their health care, their autonomy, and their lives. The confirmation process must proceed with integrity.”
The Bazelon Center for Mental Health Law is a national non-profit legal advocacy organization that advances the rights of individuals with mental disabilities. Through litigation, policy advocacy, education and training, the Center promotes equal opportunities for people with mental disabilities in all aspects of life, including community living, employment, education, housing and other areas.
The Center for Public Representation (CPR) is a national disability advocacy organization committed to protecting and advancing the rights of people with disabilities. CPR uses legal strategies, systemic reform initiatives, and policy advocacy to enforce civil rights, expand opportunities for inclusion and full community participation, and empower people with disabilities to exercise choice in all aspects of their lives.
The Autistic Self Advocacy Network (ASAN) was established in 2006 to advance the principles of the disability rights movement with regard to autism. ASAN supports the right of autistic people to enjoy equal access, rights, and opportunities, and empowers autistic individuals to take control of their own lives. ASAN provides a voice for autistic people to be heard in policy debates, and improves public perceptions of autism through education and advocacy.
A September 4 start date for the hearing is 57 days after the announcement of Judge Kavanaugh’s nomination. This extends the timeline that was set for the committee’s consideration of Justices Sonia Sotomayor, Elena Kagan, and Neil Gorsuch. Hearings for these nominees occurred 48-49 days after the president announced their nominations.
3. 10 Reasons People with Disabilities Should Oppose
Judge Kavanaugh’s Nomination
- He is a threat to your health care. Judge Kavanaugh has made clear that he thinks the Affordable Care Act is a bad law, and that the Supreme Court got it wrong when it upheld the law.
- He would allow the President to wield dangerous power. He said that the President could decline to enforce key elements of the Affordable Care Act, even after the courts have found the law constitutional.
- He is dismissive of the fundamental rights of people with disabilities. He ruled that people with disabilities who lacked legal capacity had no right to have their wishes regarding elective surgeries, including abortions, even sought or considered.
- He won’t protect the rights of workers with disabilities. In employment discrimination cases, he consistently discounts or ignores the experiences and evidence put forward by workers with disabilities and defers to the explanations of employers.
- He would narrow the protections of civil rights laws. He interpreted a vague sentence in a law to exempt a large group of workers from, in the words of the other judges, “the protections of the entire edifice” of federal antidiscrimination laws, including the Americans with Disabilities Act.
- He promotes school voucher programs that leave students with disabilities without key protections. In order to participate in these programs, students with disabilities typically are forced to waive their rights under the Individuals with Disabilities Education Act, including the right to receive a free and appropriate education.
- He discounts the role of the administrative agencies that enforce your rights. He has called for limiting the role of administrative agencies, which play a key role in enforcing civil rights protections and managing federal healthcare, employment, and benefits programs that are crucial to many people with disabilities.
- He would allow states to impose restrictive voter ID laws. These laws impose particular financial and practical burdens on many people with disabilities seeking to vote.
- He imposes barriers for people seeking justice in courts. He has urged limits on the use of class actions, which allow people with limited means to pursue their claims as a group.
- He will not fairly protect the rights of all people, including people with disabilities. As Reasons 1-9 show, confirming Judge Kavanaugh to the Supreme Court would threaten hard-won rights and protections for people with disabilities and provide a fifth vote in support of regressive views harmful to people with disabilities. We can’t let that happen.
August, 2018
Community Living Agency Denies Disability ‘Segregation’ Remarks
A federal agency responsible for community living is reaffirming its mission following allegations that a top official publicly stated that she favored “segregation” of people with disabilities.
The U.S. Department of Health and Human Services’ Administration for Community Living said it is committed to making “community living possible for all.”
The assertion comes in a letter to members of Congress weeks after the agency’s principal deputy administrator, Mary Lazare, spoke at two disability group conferences. A similar set of remarks during both appearances left some advocates alarmed and sparked concerns from a bipartisan group of federal lawmakers.
In letters sent to Lance Robertson, who heads the Administration for Community Living, last month, the lawmakers said they were told that Lazare indicated that the Supreme Court came to the wrong conclusion in the landmark Olmstead v. L.C. case, which affirmed the right of people with disabilities to access community-based living.
Furthermore, the letters from U.S. Reps. Jan Schakowsky, D-Ill., Gregg Harper, R-Miss., and Jim Langevin, D-R.I., as well as Sen. Tammy Duckworth, D-Ill., said Lazare reportedly stated a preference for segregated and institutional settings.
There are believed to be no recordings of the appearances, which Lazare made at conferences put on by the Autism Society and the National Association of Councils on Developmental Disabilities during the same July day.
However, later that day, Lazare seemed to back away from her own words through a statement on the Administration for Community Living’s Twitter page.
“I regret & apologize for my words at #ASAconf18,” the statement read. “ACL believes ppl w/disabilities have the right & choice to live in the community. We work to expand those opptys & are 100% committed to that mission. We also recognize Olmstead gives people the right to other choices.”
Now, in a written response to members of Congress, ACL’s Robertson is denying that Lazare expressed the alleged views.
“As you know, Principal Deputy Administrator Mary Lazare spoke on July 11 at two events. We know portions of her remarks caused concerns, which we are happy to address. I want to assure you that she did not state, or intend to express, the opinions referenced in your letter,” Robertson wrote.
“At ACL, we believe community living should always be the expectation,” he continued. “An integral part of our mandate is to uphold those rights guaranteed in the Americans with Disabilities Act and reinforced through the U.S. Supreme Court’s decision in Olmstead v. L.C., which we fully support.”
In addition, Robertson said his agency remains “firmly committed” to supporting the Centers for Medicare and Medicaid Services in implementing a Medicaid rule outlining what types of settings qualify as community-based. The lawmakers had indicated that Lazare reportedly said the rule should be revisited.
Even with the response, Langevin said he remains unsatisfied.
“Despite the agency’s assertion that Ms. Lazare ‘did not state, or intend to express, the opinions referenced in (our) letter,’ I remain concerned that we received no additional information or clarification on her original remarks,” the congressman told Disability Scoop. “People with disabilities deserve to be fully included in society, and any suggestion to the contrary is simply unacceptable.”
August 16, 2018
HOA Sued After Barring School Bus For Child With Special Needs
PORTLAND, Ore. — The family of a child with disabilities is suing Oregon Senate Republican Leader Jackie Winters and the Salem homeowners’ board on which she serves after it voted to bar the girl’s school from providing her with door-to-door bus service.
A lawsuit filed in May by Erika Hernandez and Paolo Regalado says the restriction violates federal and state fair housing laws. The parents are asking the court to direct the Golf Course Estates Homeowners Association to allow the school bus back into the subdivision and award unspecified damages and legal fees. They also want the HOA to develop a plan to provide equal access for people with disabilities.
The lawsuit names the board and its three members: Winters, Lee Edwards and Lori Gibson. Winters, who was first elected to the state legislature in 1998, is running for re-election this year.
According to Hernandez and Regalado, their daughter “has developmental disabilities and attends a special needs school.”
The Salem-Keizer School District has an individualized education program for the girl that specifies “due to her disability and the associated concern that she may run into the street, she is to be provided transportation to school in which the school bus picks her up directly in front of her house,” according to the lawsuit. “(Her) medical providers also found that (her) disability required that she be provided an assisted pick-up and drop-off in front of her home.”
The family moved into Golf Course Estates in February 2017, and the school bus ferried the girl without incident until Oct. 24, 2017, when the mother learned that HOA manager Sharon Bowker told the school district to stop sending a bus to the girl’s house, court documents say. Bowker then directed the district to pick the child up on heavily traveled River Road South.
Hernandez sent a letter to the homeowners’ board the next day to explain why her daughter needed the bus to pick her up and drop her off at home, including the girl’s “inability to assess dangers and the chance that she may run into the street,” court records say. She asked the homeowners’ association board to accommodate her daughter’s needs under the federal Fair Housing Act.
Although the board briefly allowed door-to-door service to continue, it voted unanimously in February to prohibit the school district from sending the bus into the subdivision, according to the lawsuit.
The district’s transportation director, Michael Shields, told Hernandez in a letter that it was his understanding that “if mail, garbage, and other services have access to the development, then we should be able to provide service as well.” However, the district ultimately complied with the association’s request. Shields could not immediately be reached for comment this week.
Hernandez attempted to speak directly with Winters about the issue through her Senate office, but never received a response, according to court documents.
Hernandez and Regalado’s suit also alleges the board’s actions violate requirements to reasonably accommodate people with disabilities under Oregon’s own fair housing law, and that board members were negligent in “failing to acquaint themselves and their agents with fair housing laws and the prohibitions against discrimination based on an individual’s disability.”
Another family with a child with disabilities had a similar experience in the subdivision. Christina Pimentel said her son Evan Lewis has autism and since he cannot ensure his own safety walking to and from a bus stop on the busy road, Evan’s individualized education program always called for door-to-door bus service.
The HOA stopped, reinstated and then stopped Evan’s bus service at the same time it was interfering with transportation for Hernandez and Regalado’s daughter, Pimentel said.
“I think somebody just complained because they didn’t want the buses in there and I didn’t understand why,” Pimentel said, noting that garbage trucks and parcel delivery trucks are allowed in the subdivision. Families stood out in a neighborhood with many residents in their mid-50s and older, and Pimentel said people left anonymous notes on her door telling her to “shut my kids up.” Her family moved over the summer after their landlord put the house on the market.
In a July 18 letter to homeowners obtained by The Oregonian/OregonLive, the HOA’s lawyer Mark Hoyt says the association’s insurer initially declined to pay for their legal defense. The board is seeking a reversal of that decision, but in the meantime allowed the district to resume bus service.
Hoyt explained that the subdivision’s streets are privately owned and maintained by the association. He could not immediately be reached for comment this week.
“In light of that, the HOA had directed that public school buses should use the school district’s own assigned bus stop on River Road and not enter onto the private streets of the development because of, among other reasons, potential liability issues, pedestrian safety hazards,” Hoyt wrote. “And the daily wear and tear on the streets from the weight and frequency of public school buses, which may result in the streets having to be repaired sooner than planned at the HOA’s expense.”
Tayleranne Gillespie, communications director for Oregon Senate Republicans, wrote in an email this week that the HOA’s insurance company has since agreed to cover legal defense costs, and Winters and other board members hired attorney Hillary Boyd with the Portland firm Davis and Rothwell.
August 15, 2018
Speech Professionals Denounce Controversial Communication Methods
A group representing the nation’s speech-language pathologists is warning against using controversial “facilitator-dependent” communication techniques with people who have disabilities.
The American Speech-Language-Hearing Association, or ASHA, unanimously approved position statements this month discouraging the use of “facilitated communication,” “rapid prompting method” and similar practices. The group said people with communication disabilities have the right to effective, independent means of communication.
In its statement on facilitated communication, ASHA said that extensive scientific research has found that messages “are authored by the ‘facilitator’ rather than the person with a disability.” A facilitator is used to provide physical support for the person to point to letters or pictures on a keyboard or communication board.
ASHA described rapid prompting method as lacking scientific validity. That technique calls for a person with a disability to point to letters to form words. The facilitator holds the letter board and provides repeated verbal, auditory or visual prompts.
Marie Ireland, an ASHA board member and speech-language pathologist, said while the group has no authority to bar the methods, she said many of her colleagues requested the information to help them inform parents who might ask for the techniques during Individualized Education Program meetings or in private practice.
“(The position statements are) meant to help educate and summarize the latest information and make people aware that while it might seem like an attractive technique to some, there’s the potential for harm,” said Ireland.
ASHA first cautioned against facilitated communication in 1995 but the updated position is more strongly worded.
“I think it will help especially for those speech-language pathologists and other interested people who don’t really know the issue,” said James Todd, a psychology professor at Eastern Michigan University who has studied both methods. “This might be unfamiliar to them and this would be a reasonable warning against using (the techniques) from a large professional organization.”
Todd said he understands why parents of children who are nonverbal might want to try the techniques, but cited cases where facilitated communication has resulted in false allegations of abuse.
Just this spring, for example, Florida prosecutors dropped charges against the father of a boy with autism after determining that abuse allegations that surfaced when a teacher used facilitated communication with the boy were unsubstantiated.
“They want to talk to their kids and be able to say, ‘I love you’ and hear ‘I love you back,’” Todd said. “The professionals have a professional obligation not to let themselves be fooled in this way.”
But others disagree with the position statements. In a letter to ASHA last month, the Autistic Self Advocacy Network raised concerns about undermining “access to communication supports for individuals who have no equally effective alternate forms of communication.”
Samantha Crane, legal director and director of public policy for the group, said already some schools have cited the recommendation in denying use of one of the methods in the classroom.
“If there’s even one person who is using this method and is truly communicating, they need to be allowed to continue to communicate,” she said. “What we really try and advocate for is a form of communication that is truly language based and open-ended, in which a person can decide which words and phrases they get to say.”
July, 2018
Disabled Activists Confront Representative Capuano about his Failure to Co-Sponsor the Disability Integration Act
BOSTON – Disability rights activists from Massachusetts ADAPT just disrupted the highly anticipated live-debate between MA-07 Congressional candidates Mike Capuano and Ayanna Pressley. Activists are demanding Capuano explain why he has failed to co-sponsor the Disability Integration Act (HR.2472) which would ensure Disabled Americans are no longer denied the most fundamental rights to Life and Liberty through unwanted institutionalization.
Since April 2016, ADAPT activists and other disability rights advocates have been relentlessly reaching out to Capuano’s office asking that he co-sponsor the Disability Integration Act. For over two years, Capuano has ignored the request of Disabled constituents and their families. He still is not a co-sponsor of this critically important piece of civil rights legislation. Today disability rights activists want to make it known that it is truly un-American to make Disabled Americans wait any longer for their inalienable rights to Life and Liberty.
“Congressman Mike Capuano U.S. House of Representatives has not co-sponsored the Disability Integration Act even though it would significantly improve the lives of people with disabilities in the Commonwealth,” said Colleen Flanagan, an organizer with Massachusetts ADAPT. “This bill is about affirming our most basic rights as Americans. It ensures out freedom. His failure to support this legislation – and our rights – is an insult to all people with disabilities.”
The activists demonstrating at the debate displayed signs that read “Disability Integration Act Now” and “Capuano do better”. One demonstrator taped a sign to back of her wheelchair that read “Capuano is the wrong choice for people with disabilities”.
“Our message should be loud and clear. We are offended by Capuano’s dismissal of the issues that matter most to us and refuse to be ignored any longer,” said Olivia Richard of Massachusetts ADAPT. “We demand that Representative Capuano immediately – and publicly – announce that he will cosponsor and vote for the Disability Integration Act.”
July-2018
New Jersey Unprepared to Close Troubled Group Homes
Since WNYC’s reporting on Bellwether Behavioral Health aired, New Jersey’s Department of Human Services, which oversees disability services in the state, has not agreed to an interview. But Assemblywoman Valerie Vainieri Huttle said she’s spoken with the department. Huttle recently helped pass state legislation to improve group home oversight.
The state promised her that it is putting in an independent monitor to watch over Bellwether’s group homes. But at this point, she says New Jersey does not have enough alternative facilities to redistribute residents from the company’s sixty-two programs.
You can hear more of our reporting on this story on Reveal from the Center for Investigative Reporting and PRX, which airs Tuesday August 7th at 8pm on WNYC 93.9fm.
July, 2018
Disability Rights Groups Protest Provider Efforts to Continue the Exploitation and Isolation of People with Disabilities
On the eve of the anniversary of signing of the Americans with Disabilities Act, Disability Rights activists from ADAPT and The National Council for Independent Living are at the Congressional Visitor Center protesting an ACCSES briefing to promote H.R. 5658, the Workplace Choice and Flexibility for Individuals with Disabilities Act which threatens to roll back the advanced made to integrate people with disabilities.
“Contrary to its name, this bill is neither about choice or flexibility for people with disabilities,” said Ami Weidler-Hyten ADAPT organizer from Topeka Kansas and the Executive Director for Programs and Operations at the Topeka Independent Living Center. “The title is doublespeak intended to mislead the public and congress about a bill that will only limit the choices of disabled people and further our segregation.”
The purpose of H.R. 5658 is to put money in the pockets of providers and businesses that profit off exploitation and segregation of the Disability Community. This bill resurrects walls of exclusion by segregating people with disabilities both socially and economically, allowing service providers to keep disabled people in workplaces that are isolated from the rest of society, and to pay those workers pennies on the dollar for the value of their work.
“It is dishonest to equate competitive, integrated, community employment with segregated, sub-minimum-wage work and it is a perversion to call the exploitation of disabled labor ‘Choice’”, said Kelly Buckland the Executive Director of The National Council on Independent Living. “This naked money grab, by service providers comes at the expense of disabled lives and liberty. In taking away our opportunities for competitive integrated community employment ACCSES is actively interfering with our ability to earn a living, support ourselves and live our lives.”
ADAPT and NCIL went to the briefing demanding that ACCSES turn it over to them to educate Congress about what real integration looks like in the workplace and the nation.
“Congress doesn’t need to hear from service providers who see our lives as nothing more than an opportunity for exploitation, bodies to profit from like the private prison and nursing home industries, said ADAPT Organizer and Not Dead Yet Director of Minority Outreach, Anita Cameron from Rochester, New York. “They need to hear from disabled people, they need to hear about the lives we want to live and the communities we want to build. 28 years after the signing of the ADA it is insulting that any organization would pretend to know our needs better than we do.”
Truth Comes Out that Horizon Misled Public to Boost Bottomline
- Horizon’s recently revealed secret playbook (McKinsey Report) that details how and when it picked hospitals for OMNIA proves the company misled the public about the criteria used to select which hospitals were rewarded Tier One Preferred Status.
- The documents corroborate Horizon knew that OMNIA would have a devastating financial impact on hospitals in the Tier 2 sub-network (a projected $100 million in profits annually), yet company representatives falsely stated the impact would be “insignificant” to legislators and in public statements.
- The report verifies that OMNIA had nothing to do with providing affordable care—large hospital systems were given preference over smaller competitors despite smaller hospitals delivering lower cost, high-quality care.
- By restricting the ability of independent providers and hospitals to thrive, Horizon is rigging the state’s healthcare market at the expense of consumers by giving larger systems growing market leverage to demand higher rates.
- Bigger was better every time in the underhanded design of the OMNIA plan resulting in reduced competition, accelerated consolidation, weakened independent institutions, limited consumer choice, and increased healthcare costs.
- Horizon spent millions relentlessly fighting to hide the truth about OMINA through lawsuits and misinformation, disregarding its legal and ethical obligations to be transparent as a nonprofit organization.
- Transparency is demanded of hospitals and doctors as a matter of public policy and trust, but Horizon, the state’s largest insurer, misled legislators and the public, doing everything possible to conceal the truth.
AUCD Strongly Opposes Decision to Let Electric Shock Treatments Continue
July 9, 2018
The Association of University Centers on Disabilities (AUCD) stands with many other national disability organizations in strongly opposing the recent decision by a Probate and Family Court judge to allow a school in Canton, Massachusetts, to continue administering electric shocks to students with intellectual and developmental disabilities.
“We are surprised and disappointed that this aversive and offensive practice of administering electric shock punishments to modify the behavior of people with disabilities has been allowed to continue,” said Andrew Imparato, Executive Director of AUCD. “This facility’s decades-long insistence on so-called ‘aversive therapy’ as a treatment of first resort defies logic, decency, and expert medical opinions.”
Using electric shocks to punish and “correct” behavior is widely discredited throughout the medical and educational community, making the Rotenberg Center the only facility in the nation that clings to the practice. Yet, despite the fact that no other facility subjects people with disabilities to these shocking machines, the judge found that the state failed to prove that they were outside the boundaries of “the accepted standard of care for treating individuals with intellectual and developmental disabilities.”
Over the past 50 years, the fields of Applied Behavior Analysis and Positive Behavior Support have developed and researched effective, non-aversive approaches to supporting individuals with severe problem behaviors. “While many practitioners once supported such aversive therapies, most competent practitioners in both fields now realize that more useful and positive approaches exist to not only decrease problem behaviors, but to improve overall quality of life and long-term outcomes,” said Dr. Don Kincaid, professor and director of the Florida Center for Inclusive Communities at the University of South Florida. “As a result, the use of electric shock for the management of problem behaviors is no longer considered a viable alternative for safe and effective treatment of our most vulnerable citizens.”
Sadly, the court seemed more concerned with the process Massachusetts used to try to end the practice than by the fact that people were being subjected to frequent electric shocks, some for more than two decades. AUCD calls on the state to appeal the probate court decision based on this facility’s consistent failure to have licensed clinicians create treatment plans that did not rely on shocking patients and the court’s failure to consider the civil and human rights of residents to be free from physical abuse.
In a proposed rule that is still under review by the U.S. Food and Drug Administration, the agency has already found there is a lack of evidence demonstrating that shock devices are effective in reducing self-injurious and aggressive behaviors on a long-term basis, and that they may even exacerbate or increase the targeted behaviors.
The time for change is now. “We agree with the FDA’s determination that these devices are ineffective and dangerous and strongly urge the FDA to release its final rule and end these abhorrent practices,” said Imparato.
The Office of the Governor published the below press release on April 19, 2018.
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Opinion
April 12, 2018
People with Disabilities Must Remain Vigilant
Many of us unfortunately need government assistance to live and remain as healthy as possible, but we are not a line item to easily be slashed
- Kevin Nunez
As a person with cerebral palsy, a lifelong developmental disability, I appreciate the obvious acknowledgment that people like me are valuable and contributing members to society.
However, I have to question the sincerity of government leaders who claim to be actively supporting the needs of people with developmental disabilities. Just look at the recent debate on Capitol Hill.
I was shocked when the U.S. House of Representatives recently passed the ADA Education and Reform Act, which removes the responsibility of owners/operators of public accommodations to make their facilities accessible according to the federal Americans with Disabilities Act. This law would require a person with a disability, who cannot gain access, to file a formal written notice of an ADA violation, then wait up to 60 days for the violating business to acknowledge the complaint, plus an additional 120 days to allow for the violation to be corrected.
As far as I know, no other instance of civil-rights violations requires the victim to wait 180 days for resolution. Can you imagine waiting roughly six months to be able to enter your local drug store, movie theater, or grocery?
This proposed law is now before the Senate, where people with disabilities like me pray it will progress no further.
There have also been calls for $1.4 trillion in cuts to Medicaid, the safety net for millions of Americans with disabilities. I was proud to join thousands of disability advocates nationwide to rise up against that idea, forcing sheepish politicians to quietly move away from such an outrageous proposal that would shatter the lives of many of the voters who put them in office.
An essential safety net
I understand that, with the recent sweeping tax-reform legislation passed in Congress, our leaders have high hopes to grow the economy and ease tax burdens for some individuals and businesses. However, I feel a prolonged tightness in my chest knowing that the only perceived solution to accommodate for the potential loss in future tax revenue seems to be to raid vital entitlements like Medicaid and other social programs. Our safety net is essential to the life and wellbeing of America’s most vulnerable citizens, including people with developmental disabilities.
Our lawmakers need to be reminded, once again, that Medicaid and the Children’s Health Insurance Program (CHIP) provide health and long-term care coverage to nearly 1.8 million low-income children, pregnant women, adults, seniors, and people with disabilities in New Jersey.
Yet the national dialogue has glided away from disability rights and protections for all Americans. Suddenly the notion that people with developmental disabilities should enjoy a strong quality of life, like any other American, appears to be in question.
Yes, many of us unfortunately need government assistance to live and remain as healthy as possible.
But we are not a line item to easily be slashed. We are Americans, always eager to contribute what we can.
Our lawmakers must be reminded that even minor cuts, let alone the draconian cuts that members of the executive and the legislative branches have suggested, would be catastrophic to a fragile support system.
New Jerseyans must demand strong and ongoing Medicaid funding. Our lawmakers need to hear us, see us, and understand just how important the continued full funding is to the fabric of our society.
Gov. Phil Murphy and our other lawmakers on the state and federal level need to be consistently reminded that Medicaid begins supporting people at birth, with healthcare and early-intervention programs.
In schools and at home, the program supports special-education programs — including both the equipment and the professionals who help students thrive. Medicaid continually supports people who require it, through end-of-life care. Not one New Jerseyan can afford for Medicaid to be cut.
I suspect we will very soon be fighting against another disastrous bill in Washington to divert Medicaid money elsewhere. Why is there a continuous attack on people with developmental disabilities? Last month we celebrated “Developmental Disabilities Awareness Month,” bringing awareness. Now, going forward, it is about demanding caution and vigilance.
Issues
February 11, 2018
N.J. Assembly leader calls for expanded heating, nutritional benefits
New Jersey Assembly Speaker Craig Coughlin proposes a measure aimed at giving greater assistance to residents who use the program once known as food stamps.
New Jersey lawmakers want to extend more help to thousands of families struggling to make ends meet.
Assembly Speaker Craig Coughlin said one of his priorities is passing legislation to provide a $21 annual energy-assistance payment to households receiving benefits under the Supplemental Nutrition Assistance program. The benefits were previously known as food stamps.
That $21 payment would allow those families to get a heating and cooling allowance that qualifies them to receive additional nutritional assistance, said Coughlin, D-Middlesex.
“Helping families with energy and nutritional assistance payments is a must,” he said. “And it’s the right approach, both socially and fiscally.”
Former Gov. Chris Christie vetoed efforts by Democrats to boost the energy assistance payment that would help about 180,000 families qualify for more nutritional assistance, according to Assemblywoman Gabriela Mosquera, D-Gloucester.
“They have lost $90 per month in food benefits,” she said. “This translates to a loss of 64 meals a month.”
Assemblywoman Shavonda Sumter said increasing the “heat-and-eat” assistance payments is an important part of the state’s goal of ending hunger.
“It is what needs to be done to help families working hard to make ends meet,” said Sumter, D-Paterson. “To help the most vulnerable residents — our seniors, our disabled, and those who rely on programs each month to just get by.”
Medicare for All: Leaving No One Behind
It has been the goal of Democrats since Franklin D. Roosevelt to create a universal health care system guaranteeing health care to all people. Every other major industrialized nation has done so. It is time for this country to join them and fulfill the legacy of Franklin D. Roosevelt, Harry Truman, Lyndon B. Johnson and other great Democrats.
The Affordable Care Act was a critically important step towards the goal of universal health care. Thanks to the ACA, more than 17 million Americans have gained health insurance. Millions of low-income Americans have coverage through expanded eligibility for Medicaid that now exists in 31 states. Young adults can stay on their parents’ health plans until they’re 26. All Americans can benefit from increased protections against lifetime coverage limits and exclusion from coverage because of pre-existing conditions. Bernie was on the U.S. Senate committee that helped write the ACA.
But as we move forward, we must build upon the success of the ACA to achieve the goal of universal health care. Twenty-nine million Americans today still do not have health insurance and millions more are underinsured and cannot afford the high copayments and deductibles charged by private health insurance companies that put profits before people.
The U.S. spends more on health care per person, and as a percentage of gross domestic product, than any other advanced nation in the world, including Australia, Canada, Denmark, France, Germany, Japan, New Zealand and the United Kingdom. But all that money has not made Americans healthier than the rest of the world. Quite simply, in our high-priced health care system that leaves millions overlooked, we spend more yet end up with less.
Other industrialized nations are making the morally principled and financially responsible decision to provide universal health care to all of their people—and they do so while saving money by keeping people healthier. Those who say this goal is unachievable are selling the American people short.
Americans need a health care system that works for patients and providers. We need to focus our federal investments on training the health care providers. We need to ensure a strong health care workforce in all communities now and in the future. We need to build on the strength of the 50 years of success of the Medicare program. We need a health care system that significantly reduces overhead, administrative costs and complexity. We need a system where all people can get the care they need to maintain and improve their health when they need it regardless of income, age or socioeconomic status. We need a system that works not just for millionaires and billionaires, but for all of us.
Under Bernie’s plan, Americans will benefit from the freedom and security that comes with finally separating health insurance from employment. That freedom would not only help the American people live happier, healthier and more fulfilling lives, but it would also promote innovation and entrepreneurship in every sector of the economy. People would be able to start new businesses, stay home with their children or leave jobs they don’t like knowing that they would still have health care coverage for themselves and their families. Employers could be free to focus on running their business rather than spending countless hours figuring out how to provide health insurance to their employees. Working Americans wouldn’t have to choose between bargaining for higher wages or better health insurance. Parents wouldn’t have to worry about how to provide health insurance to their children. Americans would no longer have to fear losing their health insurance if they lose their job, change employment or go part-time. Seniors and people with serious or chronic illnesses could afford the medications necessary to keep them healthy without worry of financial ruin. Millions of people will no longer have to choose between health care and other necessities like food, heat and shelter, and will have access to services that may have been out of reach, like dental care or long-term care.
Simply put, Bernie’s plan will provide all Americans with the sense of freedom and peace of mind that comes from knowing you always have access to the health care you need.
The Plan
Better Coverage
Bernie’s plan would create a federally administered single-payer health care program. Universal single-payer health care means comprehensive coverage for all Americans. Bernie’s plan will cover the entire continuum of health care, from inpatient to outpatient care; preventive to emergency care; primary care to specialty care, including long-term and palliative care; vision, hearing and oral health care; mental health and substance abuse services; as well as prescription medications, medical equipment, supplies, diagnostics and treatments. Patients will be able to choose a health care provider without worrying about whether that provider is in-network and will be able to get the care they need without having to read any fine print or trying to figure out how they can afford the out-of-pocket costs.
What It Means for Patients
As a patient, all you need to do is go to the doctor and show your insurance card. Bernie’s plan means no more copays, no more deductibles and no more fighting with insurance companies when they fail to pay for charges.
Getting Health Care Spending Under Control
We outspend all other countries on the planet and our medical spending continues to grow faster than the rate of inflation. Creating a single, public insurance system will go a long way towards getting health care spending under control. The United States has thousands of different health insurance plans, all of which set different reimbursement rates across different networks for providers and procedures resulting in high administrative costs. Two patients with the same condition may get very different care depending on where they live, the health insurance they have and what their insurance covers. A patient may pay different amounts for the same prescription depending solely on where the prescription is filled. Health care providers and patients must navigate this complex and bewildering system wasting precious time and resources.
By moving to an integrated system, the government will finally have the ability to stand up to drug companies and negotiate fair prices for the American people collectively. It will also ensure the federal government can track access to various providers and make smart investments to avoid provider shortages and ensure communities can access the providers they need.
Major Savings for Families and Businesses
Bernie’s plan will cost over $6 trillion less than the current health care system over the next ten years.
The United States currently spends $3 trillion on health care each year—nearly $10,000 per person. Reforming our health care system, simplifying our payment structure and incentivizing new ways to make sure patients are actually getting better health care will generate massive savings. This plan has been estimated to save the American people and businesses over $6 trillion over the next decade.
The typical middle class family would save over $5,000 under this plan.
Last year, the average working family paid $4,955 in premiums and $1,318 in deductibles to private health insurance companies. Under this plan, a family of four earning $50,000 would pay just $466 per year to the single-payer program, amounting to a savings of over $5,800 for that family each year.
Businesses would save over $9,400 a year in health care costs for the average employee.
The average annual cost to the employer for a worker with a family who makes $50,000 a year would go from $12,591 to just $3,100.
How Much Will It Cost and How Do We Pay For It?
How Much Will It Cost?
This plan has been estimated to cost $1.38 trillion per year.
The Plan Would Be Fully Paid For By:
- A 6.2 percent income-based health care premium paid by employers. Revenue raised: $630 billion per year.
- A 2.2 percent income-based premium paid by households. Revenue raised: $210 billion per year.This year, a family of four taking the standard deduction can have income up to $28,800 and not pay this tax under this plan.A family of four making $50,000 a year taking the standard deduction would only pay $466 this year.
- Progressive income tax rates. Revenue raised: $110 billion a year.Under this plan the marginal income tax rate would be:
- 37 percent on income between $250,000 and $500,000.
- 43 percent on income between $500,000 and $2 million.
- 48 percent on income between $2 million and $10 million. (In 2013, only 113,000 households, the top 0.08 percent of taxpayers, had income between $2 million and $10 million.)
- 52 percent on income above $10 million. (In 2013, only 13,000 households, just 0.01 percent of taxpayers, had income exceeding $10 million.)
- Taxing capital gains and dividends the same as income from work. Revenue raised: $92 billion per year.Warren Buffett, the second wealthiest American in the country, has said that he pays a lower effective tax rate than his secretary. The reason is that he receives most of his income from capital gains and dividends, which are taxed at a much lower rate than income from work. This plan will end the special tax break for capital gains and dividends on household income above $250,000.
- Limit tax deductions for rich. Revenue raised: $15 billion per year. Under Bernie’s plan, households making over $250,000 would no longer be able to save more than 28 cents in taxes from every dollar in tax deductions. This limit would replace more complicated and less effective limits on tax breaks for the rich including the AMT, the personal exemption phase-out and the limit on itemized deductions.
- The Responsible Estate Tax. Revenue raised: $21 billion per year.This provision would tax the estates of the wealthiest 0.3 percent (three-tenths of 1 percent) of Americans who inherit over $3.5 million at progressive rates and close loopholes in the estate tax.
- Savings from health tax expenditures. Revenue raised: $310 billion per year. Several tax breaks that subsidize health care (health-related “tax expenditures”) would become obsolete and disappear under a single-payer health care system, saving $310 billion per year.Most importantly, health care provided by employers is compensation that is not subject to payroll taxes or income taxes under current law. This is a significant tax break that would effectively disappear under this plan because all Americans would receive health care through the new single-payer program instead of employer-based health care.
Take Action: Join ACL’s Teleconference on Their Proposal to Eliminate Part B Funding
August 3, 2017 By theadvocacymonitor
President Trump’s May budget outline proposed eliminating Independent Living Part B funding as part of a new program called the Partnership for Innovation, Inclusion, and Independence (PIII). The budget proposes ‘consolidating’ Independent Living Part B funding, State Council on Developmental Disabilities funding, and Traumatic Brain Injury funding, which would result in a$57 million loss for people with disabilities.
While this proposal was not included in the House appropriations bill, the Administration for Community Living (ACL) has been instructed to move forward. ACL staff is currently analyzing the authorizing statutes for each program impacted by the creation of the PIII program and identifying possible amendments. They are also developing language that would be included in new legislation creating the PIII grant program.
National Council on Independent Living
NCIL has taken several steps to oppose this proposal. We have spoken with Congressional staff, voiced our concerns to ACL, and sent a letter of opposition to the House and Senate Appropriations Committees with several other organizations. Since then, we have continued to monitor this situation closely, and this latest movement is unacceptable. When the Independent Living (IL) Program moved to ACL, we thought it would be a home for the program that would help us grow. We did not move to ACL to see the IL Program cut!
Take Action!
ACL has started conducting outreach activities to engage with stakeholders. On August 7, from 2:30-4:30 p.m. Eastern, ACL will be holding a call for the IL community to provide input.
- Call-in Number: 800-857-9877
- Participant Code: 8400563Talking points for the call and written comments:
- Please join this call. We need ACL to hear a unified message from the IL community that this proposal will not work. The IL community cannot and will not support these efforts, because there is no way to move forward with their proposal to cut $23 million from the IL Program without seriously harming it, which will result in harm to people with disabilities all over the country. ACL is also requesting written input. Please submit your input, using the below talking points, to P3I-comments@acl.hhs.gov by Friday, August 11.
- The Independent Living community does not support this proposal.
- PIII will result in a $57 million reduction for people with disabilities, and it will cut $23 million from the Independent Living Program.
- The PIII proposal reflects a lack of understanding of the three line items involved, each of which has distinct statutory requirements in different statutes.
- Cuts to the IL Program will result in a reduced ability to serve consumers, major cutbacks and job losses at CILs around the country, and even CIL closures.
- This was proposed as a cost-savings measure. The best way to save taxpayer dollars is to increase funding for the Independent Living Program. By serving consumers in their homes and communities, the Independent Living Program saves states and the federal government hundreds of millions of dollars annually.
- Filed Under: Independent Living & The Rehabilitation Act