#HandsOff our Kids: Advocating Against Restraint and Seclusion

#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: Erik Smith

I went to Washington last month to support my wife in sharing our family’s story about restraint and seclusion. A few weeks before, the new executive of The Arc Rhode Island Family Advocacy Network put out a call to find families who would be willing to provide testimony at a Congressional hearing on this topic. Needless to say, my wife Renee and I jumped at the opportunity. We had mixed feelings about making our family’s experience so public, but felt strongly that we needed to advocate for all families to help them avoid the painful and unnecessary practices of restraint and seclusion that our son Dillon, who has autism, had experienced repeatedly in kindergarten and the first grade.

Renee Smith sits in front of Congress testifying, as an audience sits behind her.

Renee started her testimony by describing what our daily lives used to be like. She recounted the regular instances of restraint and seclusion that Dillon experienced, the multiple calls to 911 made by the school, Dillon’s increasing dislike of school, his missed educational opportunities, and the overwhelming stress on our family. I felt proud of Renee as I watched her recount, sometimes through tears, how much harm this had caused our then 6-year-old son and our family as a whole, including our marriage and our jobs. Fortunately, Renee was able to end her testimony on a very positive note. After we moved Dillon to a different public school in the same district that uses positive behavior intervention and support, Dillon is thriving.

In preparing for the hearing, we had the chance to learn more about the history of federal legislation to limit restraint and seclusion. We learned about a law (the Children’s Health Act of 2000) that includes serious limits on these practices. The only problem is that it doesn’t include school settings.

As I listened to Renee, I was struck by the contrast between my professional and personal life regarding the limitations on restraint and seclusion. I am a nurse and I work in a long-term care facility. The Centers for Medicare & Medicaid Services (CMS) strongly regulate the use of restraints in LTC facilities, with these regulations to be enforced through state Health agency survey and certification. I have always been well aware of what I can and cannot do when our patients exhibit challenging behaviors. I have received training by my employer on patient’s rights, on what we are legally barred from doing, and on effective alternatives to restraint and seclusion. I see firsthand how this benefits our patients and staff alike. But as a parent, I see how the lack of such protections have hurt my son.

This point was made in 2009 by the former chairman of the House Education and Labor Committee, Rep. George Miller, the last time there had been a hearing on restraint and seclusion:

Federal law restricts the use of seclusion-restraints to emergency circumstances for children in hospitals and community-based residential treatment facilities and other facilities supported by federal dollars.  Yet these rules do not apply to public or private school. This means an untrained medical professional is forbidden from inappropriately restraining a patient and, if they do, there are laws specifically targeted to address such behavior. But untrained classroom staff are abusing student in schools without any accountability because of a lack of federal oversight. Our children are bearing physical and emotional burden of a system designed to fail them”

It is now almost a full decade later. Far too many children like my son continue to be restrained and secluded in school. It is past time to correct this problem.

 

Trump Administration 2020 Budget Request: Old Ideas and Big Cuts

Today, the Trump Administration released a budget request that if passed by Congress, would put the lives of people with disabilities at risk. The proposal includes deep cuts to Medicaid, 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. If enacted, states would receive less federal support to administer Medicaid, resulting in restricting eligibility, cuts to services, and growing waiting lists. Furthermore, it would not adjust to changes in health care, drug costs, aging of the population, or emergencies.

Not only would both a block grant or per capita cap harm people with disabilities, but the proposal also includes applying controversial and harmful work requirements across the country. Arkansas is the first state in the nation to take health care coverage away from people who don’t meet a work requirement. In the first seven months of implementation, more than 1 in 5 people subject to the policy lost their health care coverage. Applying this policy nationally, as the budget proposal would do, would have devastating effects on health care coverage — particularly for people with complex health care needs, and likely many people with disabilities.

The Arc Responds to Three Month Extension of Money Follows the Person Passing Congress

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.

The Arc Responds to Department of Education Announcement on Restraint and Seclusion

Today, in response to the U.S. Department of Education’s announcement of an initiative to address the inappropriate use of restraint and seclusion on students with disabilities, Julie Ward, The Arc’s Senior Executive Officer for Public Policy, issued the following statement:

“The Arc appreciates the Department’s new effort to protect students with disabilities from the harmful practices of restraint and seclusion.  We believe this is a step in the right direction to move away from outdated and ineffective practices that are all too frequently used on students with intellectual and developmental disabilities (I/DD). We are hopeful that shining a light on what is happening in our schools, reinforcing the requirements of federal laws, and providing assistance to public schools will benefit all students, including those with I/DD.  However, more needs to be done by Congress to strengthen the federal protections and end these harmful practices. The Arc looks forward to working with the Administration and Congress to move aggressively in that direction.”

The Arc Responds to Texas U.S. District Court Judge’s Ruling on the Affordable Care Act

The Arc Responds to Texas U.S. District Court Judge’s ruling that the Affordable Care Act is unconstitutional:

“This ruling by District Court Judge Reed O’Connor in Texas v. Azar is of great concern. To strike down the entirety of the Affordable Care Act (ACA) puts the health of millions at risk, but we know that this case will be appealed. While the ruling does not impact the law immediately, it has raised concerns and fears for millions who have benefited from the ACA. The ACA includes historic health care coverage expansions, nondiscrimination and health insurance reforms, numerous enhancements to Medicare, Medicaid, and other provisions that benefit people with disabilities. The fact remains that the ACA is the law of the land and health care coverage will not be impacted by this decision without further court appeals and decisions. We must also remember that the Supreme Court has upheld the constitutionality of the Affordable Care Act twice.

“This is about people’s lives – their health, independence, financial stability, and so much more. The Arc remains steadfast in our commitment to advocate for and protect this law and the benefits it provides for people with intellectual and developmental disabilities,” said Marty Ford, Senior Executive Officer for Public Policy for The Arc.

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