#HandsOff is a series on The Arc’s blog that features a new story each month 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 Steve Grammer

My name is Steve. I live in Roanoke, Virginia, and I have cerebral palsy. I like to do the kinds of activities many people do—go out to the mall, restaurants, concerts, bars, and travel to places like the beach. I am an advocate with people with disabilities. I go to a lot of events to talk with members of the legislature and other government officials. I recently attended an event with U.S. Senator Kaine and a town hall meeting with Delegate Rasoul. I also serve on several state boards.

I have a lot of expenses due to my condition. In order to live in the community in my own apartment, I have to have caregivers assist me in daily activities that most people don’t think twice about. They help me with everything from health care, making phone calls, administering medications, meal prep, eating, and housekeeping, and they accompany me to events in the community.

I receive Supplemental Nutrition Assistance Program (SNAP) benefits to help me pay for food, but sometimes it’s not enough to cover my groceries. I also have Supplemental Security Income (SSI) that I use to pay for rent, transportation, personal hygiene, and other bills.

SSI helps me to have a decent life in the community, like everyone deserves. As someone who lived in a nursing home for nine years, I know how important that is. Living in the community, I am more independent. I can set up my own schedule. I know I will get good care, as I get to choose who I want to take care of me through consumer directed services. I’m able to choose what and when I want to eat versus not knowing when, what, or if I will get fed (not to mention being rushed to eat in the nursing home).

I’m able to use the restroom when I want without waiting an hour or more for someone to answer my call light. I can sleep at night and go to bed when I want, versus having to use ear plugs every night because of other residents or loud staff. If I have transportation I can be out in the community as late as I want without having to sign in and out of the nursing home and having to be back before midnight.

SSI gives me this independence. That is my only income. If the government decreases it or takes it away from people with disabilities, we cannot survive. Without SSI, many people with disabilities, like me, would end up back in institutions.

I strongly encourage the government to think about this very carefully and not make any type of cuts to SSI. Please do not take our independence away from us.

(Boston) – Jessica Kramer, assistant professor of occupational therapy at Boston University College of Health & Rehabilitation: Sargent College and The Arc of the United States have been approved for a $50,000 funding award by the Patient-Centered Outcomes Research Institute (PCORI). The award will support a project identifying the mental health research priorities of young adults with intellectual and/or developmental disabilities (IDD).

Kramer and The Arc will use the funds provided through PCORI’s Pipeline to Proposal Awards program to build a partnership of individuals and groups who share a desire to advance patient-centered outcomes research focused on finding optimal treatment approaches for young adults with IDD. Self-Advocates Becoming Empowered (SABE) will also play a significant partnership role in this project.

Pipeline to Proposal Awards enable individuals and groups that are not typically involved in clinical research to develop the means to develop community-led funding proposals focused on patient-centered comparative effectiveness research (CER). Established by the non-profit PCORI, the program funds help individuals or groups build community partnerships, develop research capacity, and hone a comparative effectiveness research question that could become the basis of a research funding proposal to submit to PCORI or other health research funders.

This project will build a national partnership between young adults ages 18-30 with IDD and their families, service providers, and researchers to identify mental health research priorities for young adults with IDD. This partnership will seek consensus on mental health priorities and corresponding intervention needs for further exploration. Kramer and The Arc’s vision is to establish a sustainable partnership that is poised to engage in patient-driven mental health research that will improve support and facilitate the lifelong wellbeing of people with IDD.

“The Pipeline to Proposal Awards program is a manifestation of PCORI’s commitment to the meaningful involvement of patients, caregivers, clinicians, and other stakeholders in all our research endeavors,” said Jean Slutsky, PA, MSPH, PCORI’s Chief Engagement and Dissemination Officer. “It provides support to those who may not otherwise have an opportunity to contribute to the field of comparative effectiveness research. We’re pleased to follow the awardees’ progress as they develop partnerships and begin to form research questions.”

PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

CONTACTS:

Boston University College of Health & Rehabilitation: Sargent College
Stephanie Rotondo, (617) 353-7476, rotondos@bu.edu

The Arc of the United States
Kristen McKiernan, (202) 534-3712, mckiernan@thearc.org

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Boston University College of Health and Rehabilitation Sciences: Sargent College is an institution of higher education which fosters critical and innovative thinking to best serve the health care needs of society through academics, research, and clinical practice. As reported by U.S. News and World Report, its graduate programs in Speech-Language Pathology and Physical Therapy rank in the top 6% of programs while Occupational Therapy is #1 in the nation. The College has more than 25 on-campus research facilities and clinical centers and offers degree programs in occupational therapy, physical therapy, speech, language and hearing sciences, health science, athletic training, human physiology, behavior and health, and nutrition. For more information, visit bu.edu/sargent.

Founded in 1839, Boston University is an internationally recognized institution of higher education and research. With more than 33,000 students, it is the fourth-largest independent university in the United States. BU consists of 17 schools and colleges, along with a number of multi-disciplinary centers and institutes integral to the University’s research and teaching mission. In 2012, BU joined the Association of American Universities (AAU), a consortium of 62 leading research universities in the United States and Canada.

The Arc advocates for and serves people with IDD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of more than 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Yesterday, by a vote of 23 to 14 the U.S. House of Representatives Committee on Ways and Means advanced legislation to cut off Supplemental Security Income (SSI) benefits for potentially hundreds of thousands of people with disabilities and seniors.

As amended by the Committee, H.R. 2792 would revive a failed former policy by targeting SSI recipients with outstanding arrest warrants for alleged felonies or alleged violations of probation or parole. This former policy ended following the resolution of class action litigation.

Federal law already prohibits payment of SSI benefits to people fleeing from law enforcement to avoid prosecution or imprisonment, and the Social Security Administration has a process in place to notify law enforcement of the whereabouts of such individuals.

Based on experience with the former policy, H.R. 2792 would not help law enforcement to secure arrests, but instead would target people whose cases are inactive and whom law enforcement is not pursuing. Most of the warrants in question are decades old and include warrants routinely issued when a person was unable to pay a fine or court fee, or a probation supervision fee. Many people are not even aware that a warrant was issued for them, as warrants are often not served on the individual. Some people will be swept up because of mistaken identity, or paperwork errors, which can take months or even years to resolve. Many people will face barriers to clearing their records based on the nature of their disabilities or their current circumstances, for example, an individual with Alzheimer’s in a nursing home.

Resolving an old arrest warrant can often involve significant time and expense, such as when a person has moved and lives far from the jurisdiction that issued, but never pursued, a decades-old warrant. Anecdotally, a very high percentage of people affected by the former policy were people with mental impairments, including people with intellectual disability.

“SSI benefits average $18 per day and are the only personal income for over one in three beneficiaries. Cutting off these modest SSI benefits will cause significant hardship and will only make it more difficult for people to resolve old, outstanding arrest warrants. Congress should reject this extreme and unconscionable proposal,” said T.J. Sutcliffe, Director, Income and Housing Policy.

As discussed at the Committee markup, the House is expected to propose to use savings from cuts to SSI under H.R. 2792 to pay for legislation to reauthorize the Maternal, Infant, and Early Childhood Home Visiting (MIECHV) program, also marked up by the Committee yesterday.

“Home visiting helps to improve maternal and child health and increases access to screening and early intervention for children with disabilities. Reauthorization of this valuable program should not be paid for by cutting off SSI for people with disabilities, seniors, and their families,” said Sutcliffe.

As highlighted in a fact sheet by the Consortium for Citizens with Disabilities, here are two stories of people harmed by Social Security’s former failed policy: Rosa Martinez, the lead plaintiff in one of several class action law suits brought against the policy, and a juvenile survivor of childhood abuse:

• Mistaken Identity: Rosa Martinez, the lead plaintiff in Martinez v. Astrue was, in 2008, a 52-year old woman who received notice from SSA that she was losing her disability benefits because of a 1980 arrest warrant for a drug offense in Miami, FL. Ms. Martinez had never been to Miami, never been arrested, never used illegal drugs, and is eight inches shorter than the person identified in the warrant. Despite an obvious case of mistaken identity, Ms. Martinez was left without her sole source of income while she cleared up the error on her own, without any help from SSA. It was only after filing a lawsuit that Ms. Martinez was able to receive her benefits.
• Juvenile Survivor of Childhood Abuse: A young man in California with intellectual disability and other mental impairments had his SSI benefits stopped because of an Ohio warrant issued when he was 12 years old and running away to escape an abusive stepfather. The 4’7” tall, 85-pound boy was charged with assault for kicking a staff member at the detention center where he was being held until his mother could pick him up. Many years later, he had no recollection of the incident.

More stories of people harmed by SSA’s former failed policy are available from Justice in Aging.

Washington, DC – Today, The Arc released the following statement on the news that President Trump will wind down the Deferred Action for Childhood Arrivals, or DACA, program:

“The Arc’s public policy goals include protecting against forms of discrimination including that based on disability, ethnicity, race, religion, language, national origin, or any other protected status. The goals also call for providing a fair opportunity for people with disabilities to reside legally in the U.S. and to become citizens. We also urge appropriate waivers of immigration law to allow for active recruitment of direct support workers.

“For hundreds of thousands of young people with the DACA protected status, their nightmare came true with the news that the program will end and they are at risk of deportation for a decision years ago made by others when they were children. Many would be sent to countries they have no real knowledge of or contacts in. In some cases, deportation could be dangerous.

“Amongst those at risk are people with disabilities, their parents, siblings, friends, and allies. The natural support system for a person with a disability tends to be their family, and over the last several decades, American society has moved toward inclusion in the community instead of isolation for people with disabilities. And so when the family is ripped apart – siblings sent thousands of miles away, a person with a disability separated from their parents – life is turned upside down. When communities lose people of different abilities and backgrounds, we all lose. Ending DACA is an assault on community inclusion and would move our country backwards.

“This is a cruel outcome that Congress must fix before it’s too late – before people are shown the door and their lives, families, and communities are impacted forever,” said Peter Berns, CEO, The Arc.