The Arc Responds to Food and Drug Administration’s Intent to Ban Use of Electric Shock Devices

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.

The Arc Responds to Final Passage of the Farm Bill

Washington, DC – The Arc released the following statement following final passage of the 2018 Agriculture and Nutrition Act:

“We applaud the Senate and House of Representatives for their bipartisan work on the Farm Bill (H.R. 2), passed this week in the Senate by a vote of 87-13 and in the House by a vote of 369-47. We are pleased that the version of the bill that was passed rejects cuts to the Supplemental Nutrition Assistance Program, known as SNAP, which more than 11 million people with disabilities across the United States rely on to help them eat. Once signed into law, this bill will preserve access to basic food assistance for people across the country, including those with disabilities who rely on SNAP to put food on the table. We urge President Trump to sign this bill into law as soon as possible,” said Marty Ford, Senior Executive Office of Public Policy, The Arc.

The Arc Mourns the Passing of President George H.W. Bush

The Arc released the following statement following the death of President George H.W. Bush.

“President Bush and members of his administration were crucial participants in the development and enactment of the Americans with Disabilities Act, one of the greatest legislative victories for people with disabilities in our nation. This landmark law is one of the ways in which our country leads the world in respecting and valuing the lives of people with disabilities.  We salute the important impact that President Bush’s commitment to civil rights will continue to make in the lives of people with disabilities for many generations to come,” said Peter V. Berns, CEO of The Arc.

Thankful for SNAP: November 2018 #HandsOff

#HandsOff is a series on The Arc Blog where individuals and families across The Arc’s network share their stories about how some of today’s key policy issues impact their day to day lives.

By Anne Clinard Barnhill

My sister, Rebecca, is sixty years old and one of the most amazing and resilient women I have ever met. When she was born in 1958, autism was barely whispered among doctors. The general public knew nothing about the condition. Becky wasn’t officially diagnosed with autism until she was thirty-seven years old.

She is living life as fully as possible. She shops, goes to the Senior Center for exercise two or three times a week, goes to Weight Watchers, and continues to hone her independent living skills.  Several years ago, she participated in a program called Beyond Academics at the University of North Carolina. Innovative and person-centered, this four-year program allowed Becky to attend classes on campus, just like traditional college students — only she studied self-care, cooking, budgeting, and other independent living skills.

After graduation, she made the choice to live independently with a roommate. They split the rent and utilities, but food is purchased on an individual basis. Becky blossomed in the independent living situation. She made friends and learned her way around Wilmington. She cannot yet use public transportation, but that is one of her goals. She has procured a part-time seasonal job, which she loves. She works one afternoon per week from Memorial Day through Labor Day.

One thing that makes this life possible for her is the Supplemental Nutrition Assistance Program (SNAP). Millions of people with disabilities, like Becky, rely on SNAP to access the food they need. Last week, SNAP helped Becky prepare for Thanksgiving as she was able to gather the ingredients she needed to prepare a tasty meal, with help from family and friends.  Support from SNAP helps her to purchase to healthier foods like fresh fruits and vegetables. As a breast cancer survivor, she needs to eat a lot of fresh food to help keep a recurrence from happening. She makes wise choices with her SNAP food monies and this helps keep her healthy. If SNAP were taken away, she would be forced to purchase cheap processed foods and would rarely afford fresh produce.

SNAP enables Becky to continue living independently. She is happier, healthier, and SNAP helps make it all possible. I beg Congress to protect the SNAP program.

Becky has the courage of a lion and the heart of tiger. She has braved many situations with dignity and such gumption. She needs a little help from her friends — don’t we all? SNAP is her friend and I pray she continues to receive this, as without SNAP, her whole life — the life she has built brick by brick — will be at risk of tumbling down.

Time to Check Your Health Insurance

2019 Open Enrollment:

November 1, 2018
Open enrollment begins

December 15, 2018
Open enrollment ends

January 1, 2019
Coverage begins

If you’re uninsured or looking for more affordable health insurance, the “open enrollment” period is the time to visit healthcare.gov or your state’s marketplace or health insurance exchange. During “open enrollment”, private health insurance options can be reviewed and coverage can be purchased. People with low and moderate incomes may be able to get financial help to pay for health insurance coverage. Assistance to pay for premiums and other cost-sharing may be available for individuals and families, depending on which plan is purchased and the families’ income level. If you get health insurance through your employer, Medicaid or Medicare, you are not eligible for this assistance.

You can also sign up for insurance outside of the open enrollment period, if you lose your job, get married, divorced or have a baby. You may enroll in Medicaid or the Children’s Health Insurance Program (CHIP) at any time.

Do all states have the same open enrollment dates?

No. Some states have longer enrollment periods. States with different ones are listed below:

California: Oct. 15, 2018 – Jan. 15, 2019

Colorado: Nov. 1, 2018 – Jan. 15, 2019

DC: Nov. 1, 2018 — Jan. 31, 2019

Massachusetts: Nov. 1, 2018 – Jan. 23, 2019

Minnesota: Nov. 1, 2018 – Jan. 13, 2019

Rhode Island: Nov. 1, 2018 – Dec. 31, 2018

 

 

If you have a disability or a health condition, be sure to ask before you select a plan:

  • Are a broad range of health care providers included in the health plan’s provider network?
  • Are there enough medical specialists in the network to meet your needs?
  • Are the medications you need included in the plan’s list of covered drugs? Has the cost sharing changed? Are there other requirements like prior authorization?
  • Is there adequate access to non-clinical, disability-specific services and supports?
  • Does the plan have service limits, such as caps or limits on the number of office visits for therapy services?
  • Are mental health services covered to the same extent that other “physical” health benefits are covered?

I already have health insurance through the Marketplace. Do I need to do something?

It is important to update your income and household information in the Marketplace to make sure you get the assistance that is available to you.  

  • This is also a good time to check your health insurance coverage and see if it still meets your healthcare needs.
  • If a new plan does not cover your providers or services, seek more information about transitioning from your current provider to a new one.
  • You should carefully read all health insurance notices and updates.
  • If your income has increased, updating your information with the Marketplace will help avoid paying penalties.

I and/or my family members are uninsured, can we sign up?

Uninsured individuals can go online, enter information and review insurance options. Information on monthly premiums, deductible costs, doctors, hospitals and which drugs are covered by a plan should be available. Enrollment is limited to individuals who live in the United States, are U.S. citizens, nationals, or non-citizens who are lawfully present, and not currently incarcerated. If you have not signed up for an insurance plan, it is important to note that you may be subject to a fee for not having health care coverage.

Most individuals will be able to get health insurance coverage regardless of pre-existing health conditions or prior denial of coverage. However, due to recent federal changes, the marketplace may sell policies that do not include the protections from the Affordable Care Act (ACA). These ACA protections include covering essential health benefits such as rehabilitation or behavioral health and ensuring that plans do not charge people with preexisting conditions more for coverage. It is more important than ever to thoroughly review what benefits a plan offers and what it costs.

Where can I go to get help?

Purchasing health insurance can be complicated. If you or your family member needs assistance with understanding the options, healthcare.gov can help. Each state has health insurance “navigators” to assist individuals with enrollment in health insurance plans. Individual health plan information should be available in late October 2018 on the website. If you would like more information on specific topics, the National Disability Navigator Resource Collaborative has a comprehensive set of materials available on disability issues and the Affordable Care Act.

Website: www.healthcare.gov
Phone: 1-800-318-2596 (Available 24/7 with access to 150 languages)
TTY: 1-855-889-4325
In-Person Assistance Resources: localhelp.healthcare.gov

The Arc Responds to Tax Cuts 2.0 Passed by the House of Representatives

Today the House of Representatives passed a tax bill that would permanently extend tax cuts signed into law at the end of last year in the Tax Cuts and Jobs Act. The Arc released the following statement in response:

“This is more of the same irresponsible tax legislation we opposed last year. Reducing federal revenue as this bill does will increase the pressure to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities.

“We are disappointed that the House leadership rushed to pass this bill with no consideration of the individuals with disabilities and others who would be negatively impacted. The Senate is our last line of defense, and we implore Senators to do the right thing and oppose this bill,” said Marty Ford, Senior Executive Officer of Public Policy for The Arc.

The Arc Opposes Appointment of Judge Kavanaugh to the US Supreme Court

Today, The Arc came out in opposition to Judge Brett Kavanaugh’s appointment to the United States Supreme Court. This opposition is based on Judge Kavanaugh’s record on cases relating to disability and civil rights.

Of particular concern are his decisions on cases involving self-determination of individuals with intellectual and developmental disabilities (I/DD), education, employment, and his stances on the Affordable Care Act and school choice.

“We did not take lightly the decision to oppose Judge Kavanaugh’s appointment to the US Supreme Court, but after a thorough analysis of his record, we cannot idly sit by knowing that he has demonstrated a disregard for the impact of his judicial philosophy on the lives of people with disabilities and their families time and time again. Judge Kavanaugh has written several troubling opinions and dissents on cases related to disability rights and The Arc’s constituents, including those pertaining to education, affordable health care, and self-determination.

“Particularly concerning is his opinion in Doe. V. Tarlow, a case where women with intellectual disability who resided in the District of Columbia’s Forest Haven institution brought a class action lawsuit against the District for violating their due process rights. The District, through its developmental disabilities agency, consented to subject them to non-emergency surgical procedures, including abortions and eye surgeries, without even talking to them and their family members. Judge Kavanaugh’s ruling is disturbing in his apparent lack of appreciation for the humanity of individuals with intellectual disability, their basic human rights, and their ability and right to participate in important life decisions even when found legally unable to make decisions by themselves.

“The Arc urges Senators to not confirm Judge Kavanaugh’s nomination to our highest court. The Senate should not confirm a Justice to the Supreme Court whose judicial philosophy threatens the autonomy and well-being of people with intellectual and developmental disabilities,” said Peter V. Berns, Chief Executive Officer of The Arc.

The Arc Responds to the Department of Education’s Rescinding of Affirmative Action Guidance

Last month, the Trump administration rescinded guidance the Department of Education provides to colleges, universities and K-12 schools on how they can use race and ethnic background in admissions decisions to promote diversity. The Arc has released the following statement in response to the Trump Administration’s actions:

“This is the latest of a series of moves that shows this Administration’s intentions to chip away at the instruments that have been put in place to increase equity and access to quality education for our country’s most vulnerable populations.

“Two weeks ago, The Department of Education and the Department of Justice delayed by two years a regulation intended to prevent race-based imbalances in pre-school and K-12 education for students with disabilities, a regulation whose delay was opposed by the vast majority of parents, students and administrators who submitted public comments.

“Earlier this year, the Administration also indicated its intent to rescind a guidance package to prevent racial disproportionality in public school discipline. While guidance documents are non-binding practical tools that help school systems follow the law, the Trump Administration’s collective actions make clear that it is scaling back efforts made by previous administrations to encourage diversity in our schools. This is a troubling trend in policymaking that may lead to poorer education outcomes for many Americans with and without disabilities,” said Marty Ford, Senior Executive Officer of Public Policy, The Arc.

Labor Department Finalizes Rule Expanding Non-ACA Compliant Association Health Plans

Critical Consumer Protections Missing, Potentially Impacting Affordability of Other Plans

On June 19th, the Employee Benefits Security Administration of the U.S. Department of Labor (DOL) announced a final rule on Association Health Plans (AHPs), finalizing the DOL’s proposed rule released on January 5, 2018. AHPs allow groups of small business to band together and purchase health care plans for their employees. The rule exempts these association plans from some of the requirements of the ACA. It allows plans to be sold that do not provide a minimal level of health care services so they may be cheaper and attract healthier people. This in turn could make the ACA compliant plans more expensive if they have more people who require health care services in their risk pools.  This rule will undermine the Affordable Care Act (ACA) and the critical consumer protections the ACA provided to people with disabilities and chronic health conditions.

Before the ACA became law, it was extremely difficult for people with pre-existing conditions to purchase affordable and comprehensive health insurance in the individual and small group market.  Finalizing this rule and other actions by the Administration signal a return to unaffordable and skimpy health insurance and a corresponding increase in the cost of ACA compliant health plans. The following are specific concerns with the AHP final rule:

  • Incomplete Coverage of Essential Health Benefits (EHBs) – These plans would not be subject to the ACA’s requirement to cover all ten categories of EHBs. They could exclude coverage for mental health, substance abuse services, and rehabilitative and habilitative services and devices and other essential health benefits. People with disabilities and chronic health conditions rely on these basic health care services to maintain their health and function.
  • Purchasing Confusion – Unlike other plans, AHPs are not required to adhere to the ACA’s consumer protections. This causes confusion among Americans about which types of plans will cover the services they need. Consumers could unknowingly purchase plans that could leave them underinsured if they become ill or need medical care.
  • Higher Premiums Based on Age and Gender – AHPs cannot charge higher premiums based on health status, but they do allow AHPs to base premiums on age and gender. This means women and older workers could end up saddled with higher out-of-pocket costs.
  • Undermined Risk Pool – AHPs are likely to attract younger, healthier workers away from the individual and small group marketplaces. This skewing of the risk pool will force these marketplace plans to raise premiums on comprehensive plans, increasing costs for people with disabilities and older Americans. It will leave AHP enrollees with bare bones benefit packages that are more likely to fail to meet their needs when needed most.
  • History and Risk of Fraud – AHPs have a history of fraudulent operation in which unauthorized health insurance companies fail to comply with regulation, collect premiums for nonexistent insurance, fail to pay claims, and leave patients with hefty medical bills. AHPs expanded under the final rule could cause a new wave of fraud, leaving people with disabilities vulnerable to ending up uninsured.

The Arc will continue to analyze the impact of health care rulemaking on people with disabilities and chronic health conditions and respond to changes that negatively impact people with disabilities.

#HandsOff Medicaid for this Rockstar Musician

#HandsOff is a series on The Arc Blog. Each month, we feature a story from individuals and families across The Arc’s network about how some of today’s key policy issues impact their day to day lives.

By: Rachna Heizer, Member of The Arc of Northern Virginia

I am the mother of Jake, a 16 year old rockstar musician with autism. The first thing you might notice about Jake is he doesn’t maintain conversations, but he can rock your world onstage. He loves to play his guitar and sing. He performed 44 times last year, and even auditioned on Broadway. When Jake was seven years old, he first picked up a guitar and three days later was playing full songs – we knew he had an amazing ability.

Jake and Rachna

Medicaid is an important part of the fabric of our family. Through Medicaid, Jake has an attendant who comes after school to provide care to him so I can continue my job. Jake and his attendant work together on independent living skills. They practice how to have conversations in the community, how to go places, how to be independent, so the hope would be that someday, when he’s out of our home, he can live independently in the community, access grocery stores, run his errands, and live his life like anyone else.

 

Jake performing on stage

Without Medicaid, I would have to quit my job and it would significantly impact our financial ability to maintain our home. It is a significant support that allows us to help foster Jake’s ability in his music, and provide him a path to the productive world when he is older.

It’s important to say #HandsOffMedicaid because without the supports provided by Medicaid, both my son and I — and many people with disabilities and their families — lose the support and services they need that allows us to stay in our society, gainfully employed and living with dignity amongst everyone — and in Jake’s case, to keep rockin’!