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Why the Tax Cuts and Jobs Act Is Bad for People With Disabilities

/in /by The Arc

Legislative Timeline

House of Representatives

  • Nov. 16: House passed its version of the Tax Cuts and Jobs Act

Senate

  • Week of Nov. 27: Senate plans to vote on its version of the Tax Cuts and Jobs Act
  • 51 votes are needed to pass the legislation

Background

The Arc’s longstanding position on tax policy is that it should raise sufficient revenues to finance essential programs that help people with disabilities to live and work in the community. The Arc also supports tax policy that is fair and reduces income inequality; people with disabilities are twice as likely to experience poverty.

Unfortunately, both the House and Senate versions of the Tax Cuts and Jobs Act (H.R. 1, Senate Version) fail to meet either standard. Both bills would dramatically reduce revenue that the federal government uses to pay for critical programs. As the tax revenue decreases it will likely build pressure to cut Medicaid, Medicare, Supplemental Security Income, and other critical programs for people with disabilities to make up for lost revenue.

Why is the Tax Cuts and Jobs Act Harmful?

Congressional BudgetThe House and Senate bills reduce federal revenue by about $1.5 trillion over 10 years. Members of Congress have acknowledged that passing these tax cuts will make it easier to justify spending cuts down the road. The Congressional Budget Office (CBO) also notes that automatic spending cuts may be triggered if Congress does not act to prevent them. These automatic cuts could mean a $25 billion dollar cut to Medicare in 2018. Automatic spending cuts could also slash funds that go to states to operate critical programs such as the Vocational Rehabilitation state grant program and the Social Services Block Grant.

How Do the House and Senate Bills Compare?

The Arc opposes both the House and Senate bills. The chart below is meant to explain the differences between the two bills.

In House Bill In Senate Bill
Repeal of Individual Mandate for health insurance coverage. CBO estimates 13+ million fewer people with health insurance andpremium hikes of 10% in the insurance marketplace. The individual mandate helps ensure that enough healthy people purchase health insurance to keep insurance affordable. x
Repeal of the medical expense deduction. Nearly 9 million filers claim this deduction for medical care expenses that exceed 10% of an individual’s or family’s adjusted gross income. It offsets some of the high out of pocket medical expenses that some people with disabilities incur, such as high cost prescription drugs, long term physical and occupational therapies, wheelchairs, prosthetics, and long term supports and services. x
Repeal of the Disabled Access Credit (DATC). The DATC assists small businesses in meeting obligations under the Americans with Disabilities Act (ADA). It allows small businesses (with < 31 employees and gross receipts < $1 million a year) to claim a tax credit. The credit provides 50% of eligible expenditures between $250 and $10,000 for a maximum of $5,000. x
Repeal of the Work Opportunity Tax Credit (WOTC). WOTC is available to employers for hiring individuals from certain target groups, including people with disabilities. The WOTC for people with disabilities provides a credit for up to 40% of the first $6,000 in wages, for a maximum of $2,400 for SSI beneficiaries but up to $9,600 for certain disabled veterans. x
Reduce affordable housing production under the Low-Income Housing Tax Credit (LIHTC) program. LIHTC funds the creation of affordable housing across the country. Both the House and Senate bills would make changes to the LIHTC program that would reduce the number of affordable housing units produced. Changes proposed by the Senate bill are estimated to reduce units produced by roughly 300,000 over the next 10 years. The House bill has proposed even more dramatic changes, estimated to reduce units produced by nearly 1 million over the next 10 years. x x
Reducing incentives for charitable deductions. Raising the standard deduction could reduce the number of taxpayers who itemize deductions – including charitable donations – from the current 30% to 5%. Combined with a decrease in the top marginal tax rate, the disincentive to itemize would reduce charitable giving by $4.9 billion to $13.1 billion annually. Many of the providers of services to people with disabilities are non profits that rely on charitable giving. x x
Repeal or limit Orphan Drugs Credit. Businesses can receive this credit for clinical testing expenses for certain drugs for rare diseases or conditions. It is estimated that if the orphan drug credit were repealed one-third fewer drugs addressing rare diseases would be developed in the future. x
Repeal		 x
Limit
Creation of an inadequate paid leave tax credit. The Senate bill would create a two-year employer tax credit for paid family and medical leave expenses, modeled after the Strong Families Act. As structured, this tax credit is likely to primarily subsidize companies that already offer paid leave or that would have chosen to offer new or expanded paid leave benefits without a tax credit. This means that, in addition to losing revenue, the proposal would do little to reduce current gaps in access to paid leave that particularly impact workers with disabilities and their families. x
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The Arc Responds to House Passage of the Tax Cuts and Jobs Act

/in /by The Arc

“We vehemently oppose this bill and the threats it poses to people with intellectual and developmental disabilities”

 

Washington, DC – The Arc released the following statement in response to the House of Representatives passing the Tax Cuts and Jobs Act:

“The Arc has a longstanding position that tax policy should raise sufficient revenues to finance programs that support people with disabilities to live and work in the community. The Tax Cuts and Jobs Act does the opposite. By reducing revenue by at least $1.5 trillion, the bill increases the pressure to turn next to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities.

“We vehemently oppose this bill and the threats it poses to people with intellectual and developmental disabilities. We now turn our attention to the Senate, which is considering legislation that will also increase the deficit and repeal a portion of the Affordable Care Act that would undermine the entire law. The disability community has fought against threats to vital programs and won several times this year, and we are prepared to do it again,” said Peter Berns, CEO of The Arc.

 

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (IDD), 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Forging New Friendships through Community Service

/in /by The Arc

Those who are not looking for happiness are the most likely to find it, because those who are searching forget that the surest way to be happy is to seek happiness for others. -Martin Luther King, Jr.

Linda and Hannah at ACES

Linda and Hannah at ACES (from left to right)

Inclusive volunteering gives people with and without IDD the opportunity to meet new people in the community while helping those in need. These new connections can lead to long-lasting friendships that impact not only community members being served by the volunteers but the volunteers themselves.

This past year, The Arc of Hanover in Ashland, Virginia, received a grant to work on The Arc’s Martin Luther King, Jr. Day of Service project.*

The Arc of Hanover’s Executive Director, Caroline Kistler, saw this grant as a key opportunity not only to serve people in need but also as an opportunity to help build friendships between young men and women of all abilities in the community. “Making friends with people different from yourself opens you up to new experiences, and allows you to see life from someone else’s perspective. As is true of all friendships, friendships among people with different abilities expand a person’s support system, and have a positive impact on a person’s life.”

Caroline recruited young adults with IDD at The Arc of Hanover and students at Randolph-Macon University to volunteer at Ashland Christian Emergency Services (ACES), a local nonprofit that provides food, clothing, and aid to people in need in the community. Caroline paired volunteers with and without IDD together so that people would be able to meet new people and learn from each other.

One pairing was Randolph-Macon University student Hannah Sommer and Linda George. While they were serving others, Hannah and Linda struck up a friendship. Hannah shared, “I always looked forward to spending time with her and the other students in the class. I was sad when the semester ended because I did not think I would get the opportunity to interact with the members of The Arc anymore.”

However, Hannah did have an opportunity to continue her connection with The Arc of Hanover as an intern the following semester. She appreciates that the internship “has allowed me to still keep in touch with Linda and the members of The Arc frequently, and has allowed me to learn so much about the disability community.” For Hannah, her relationship with Linda has been an important experience for her, and one that has been more meaningful because they met through service. “The relationships that are built and the friendships that are made through inclusive volunteering are like no other. Not only does the act of volunteering with a person with an intellectual or developmental disability benefit yourself and that individual, but together, you are working to benefit the lives of others.”

For Linda, befriending Hannah and volunteering with her has been important to her. “I liked working with Hannah and helping people. It was fun being able to volunteer with my friend. It feels good to be able to help people. I enjoyed being with Hannah.”

We hope that Linda and Hannah, and other volunteers paired through this program will continue their friendship, and continue serving their community! For people interested in learning more about The Arc’s MLK Day of Service Project, inclusive volunteering, and how volunteering can help people grow new relationships, visit https://www.thearc.org/inclusive-volunteering.

*In 2015, The Arc was selected by the Corporation for National and Community Service (CNCS), the federal agency that leads the Martin Luther King, Jr. Day of Service, to plan and execute volunteer projects that unite Americans in service for the MLK Day of Service and throughout the year. To date, 16 chapters of The Arc around the country have organized inclusive volunteer service projects where people with intellectual and developmental disabilities (IDD) volunteer alongside people without disabilities to provide food to people in their communities who are in need. In total, these projects have brought together over 1,000 volunteers to serve more than 14,000 people in need.

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The Arc Brings Disability Perspective to Police-Led Hate Crimes Advisory Committee

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Hate Crimes Panel Group

Leigh Ann Davis, Chief Will Johnson with Arlington Police Department (TX), Peter Berns, Ariel Simms

Since 2013, The Arc’s National Center on Criminal Justice and Disability® (NCCJD®) has served as a bridge between the disability and law enforcement communities, and is the first-of-its-kind national clearinghouse for information and training on the topic of people with IDD as victims, witnesses, suspects and incarcerated persons. The Arc’s work to elevate these issues led to the opportunity to attend and present at the 2017 International Association of Chiefs of Police (IACP) national convention in Philadelphia, Pennsylvania. While at the conference, staff, including CEO of The Arc Peter Berns, participated in the initial “Enhancing the Response to Hate Crimes” Advisory Committee meeting co-hosted by IACP and the Lawyers’ Committee for Civil Rights Under Law (Lawyers’ Committee). In attendance were law enforcement and civil rights leaders, such as The Anti-Defamation League; the Baltimore Police Department; The Leadership Conference on Civil and Human Rights, and many others from across the country who met to develop an achievable action agenda to improve the criminal justice system’s response to hate crimes. According to the FBI, 1.2% of hate crime victims were targeted because of disability in 2015. Many disability advocates find this statistic misleadingly low, as individuals with IDD frequently cite barriers to reporting crimes committed against them. In 2015, NCCJD explored these barriers and potential solutions in its white paper, Violence, Abuse and Bullying Affecting People with Intellectual/Developmental Disabilities: A Call to Action for the Criminal Justice Community.

“We are proud to lead a committee of such outstanding leaders who are coming together to invest their time and effort into breaking down barriers and strengthening the relationship between law enforcement and the communities that are too often the targets of hate crimes,” said Lawyers’ Committee President and Executive Director Kristen Clarke.

Hate Crime Advisory Panel

The Arc’s NCCJD staff presented with Chief Will Johnson and Melissa Bradley with DOJ’s COPS Office on applying procedural justice to situations involving people with disabilities

At this first in a series of four meetings, members began to develop key principles for improving the response to hate crimes. The committee also discussed the many legal, economic, emotional, social, and safety issues that arise in the wake of hate incidents and hate crimes, as well as proposed recommendations on appropriate responses.

Subsequent meetings will continue to solicit input from additional law enforcement and civil rights leaders as well as community members targeted for hate crimes. The committee will use this input to craft an action agenda for community and law enforcement leaders, which will ultimately improve the safety of communities targeted by hate. The Arc is thrilled to participate in this important work, as the organization continually strives to raise awareness among law enforcement and other agencies about the high rate of victimization in the disability community (for more information about training for criminal justice professionals see www.nccjdpathwaystojustice.org). Furthermore, The Arc’s National Center on Criminal Justice & Disability works to ensure that any reporting efforts related to hate crimes (and other crimes) include effective outreach methods for people with IDD who remain traditionally underserved and overlooked in today’s criminal justice system.

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The 2018 Congressional Budget and Tax Cuts: What It Could Mean for People With Disabilities and What We Must Do

/in /by The Arc

The CapitolThis year’s Congressional budget process is particularly important for people with disabilities and their families. The recently-passed House and Senate fiscal year 2018 budgets set overall spending and revenue targets for the next 10 years. But beyond this basic function, Congressional budget writers have been clear that an underlying goal of the 2018 budget is to set the stage for a massive tax cut bill. The Arc is concerned that significant loss of federal revenue will result in cuts to programs for people with disabilities

The Senate passed its Budget on October 19 and the House passed the same Senate Budget a week later. House Speaker Paul Ryan (R-WI) is aiming to pass a tax cut bill before Thanksgiving that, under budget rules, can be passed by a simple majority vote in the Senate. A great deal is at stake. Here’s what it could mean for people with disabilities, and what we must do.

What is in the Congressional Budget?

Congressional BudgetThe Budget allows for up to $1.5 trillion to be added to the deficit over 10 years. Congressional committees are now drafting tax cut legislation that does not have to be paid for unless it goes above $1.5 trillion. But if the cost of tax cut legislation goes above that amount, then any amount over that could come directly from cuts to Medicaid, Medicare and many other programs that are critical for people with disabilities. The Budget assumes, but does not require, some $5 trillion in spending cuts over 10 years, as well as optimistic projections of economic growth, to make up for lost tax revenue.

What Do We Know About the Proposed Tax Cuts?

While the tax cut legislation has not yet been developed, the tax plan framework released by President Trump and key Congressional leaders in September indicates that its benefits may be heavily tilted towards wealthy individuals and corporations. Several types of taxes that it proposes to eliminate or reduce are only paid by very wealthy households, such as the estate tax that is only paid by individuals with estates worth over $5.5 million. See The Arc’s statement on the tax framework.

What Will The Arc Be Watching Out For?

At this point there are many unknowns. Here are five things that The Arc will be watching out for:

  1. Cuts To Medicaid, Medicare, Supplemental Security Income (SSI) or Other Critical Programs To Pay For Tax Cuts. The Budget instructs the Senate Finance Committee and the House Ways and Means Committees to develop legislation. In addition to taxes, the Senate Finance Committee has jurisdiction over many critical programs, including Medicaid, Medicare, SSI, Temporary Assistance for Needy Families, Child Welfare Services, Maternal & Child Health, the Social Services Block Grant, the Independent Living Program, and more. Therefore, the Committee may choose to draft a bill that cuts any of these programs and this bill could be passed with only a simple majority (51 Senators, or 50 Senators plus the Vice President) in the Senate rather than the 60 votes that are usually needed.
  2. Loss of Revenue that Sets the Stage for Cuts to Essential Programs. The Senate Finance Committee and House Ways and Means Committees could also choose to draft bills that only contain tax cuts. As noted earlier, budget rules allow for tax cuts that could increase the federal deficit by up to $1.5 trillion. Many members of Congress who favor tax cuts also favor cuts to programs such as Medicaid and Medicare. The Arc is concerned that passing a large tax reform bill that increases the deficit will make it easy to justify spending cuts down the road.
  3. What Happens with Tax Breaks.

    Tax Expenditures that Benefit
    People with Disabilities:

    • Standard deduction for people who are blind
    • Architectural and Transportation Barrier Removal Deduction
    • Disabled Access Credit
    • Work Opportunity Tax Credit
    • Impairment-Related Work Expense Deduction
    • The Low-Income Housing Tax Credit
    • Achieving a Better Life (ABLE) Tax Advantaged Savings Accounts

    For many years, supporters of tax cuts have called for the elimination of certain tax expenditures, also called tax breaks. If certain tax breaks are eliminated, the argument goes, then tax rates can be lowered for most people. In other words, getting rid of some tax breaks can pay for the desired tax cuts. However, not all tax breaks are alike. In fact, there are numerous tax expenditures, which come in the form of credits, deductions, exclusions, exemptions, preferential rates, or deferrals of tax liability. These tax expenditures presently total $1.5 trillion. The Arc will advocate to maintain expenditures that benefit people with disabilities and their families and oppose the elimination of those that only affect the most prosperous.Additionally, The Arc will work to ensure that tax provisions that could be harmful to people with disabilities are not included. For instance, we oppose education tax credits that reduce federal revenues in order to subsidize education in private schools that are not bound by the Individuals with Disabilities Education Act (IDEA) to provide needed services.

  4. US MapBasic Fairness. We expect that changes to the tax code should primarily benefit the majority of people living in the U.S., namely those with low and middle incomes. Public opinion polls show that sentiment is shared broadly. 62% of Americans actually favor increasing taxes on the wealthy, according to the most recent Wall Street Journal poll. However, this does not appear to the case in the tax reform framework, with families in the lower rungs showing only slight gains. The top 1 percent of households, however, are projected to receive 80 percent of the tax cuts by 2027. Click on the map at right to see average tax changes by income group in each state under the proposed framework.
  5. Mainstream Economics – Real Numbers and Real Issues. Tax cuts should be based on generally accepted economic theory and methodology. The Arc is concerned that controversial methods, such as dynamic scoring, will be used to overstate the economic benefits of enacting tax cuts. We also know from recent and historic examples that tax cuts have often not yielded promised results and have instead resulted in increased deficts and harmful programs cuts. The Kansas tax cuts provide a cautionary tale.

For more information, see:

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The Arc Condemns Federal Immigration Detainment of Rosamaria Hernandez

/in /by The Arc

Washington, DC – The Arc released the following statement in response to the detainment of Rosamaria Hernandez, a ten-year-old child with cerebral palsy, who was stopped by federal immigration officials on her way to the hospital for emergency surgery, and detained upon her release from the hospital.

“The images of uniformed agents trying to stop a child from getting to the hospital and then standing outside her room while a child with a disability is having a medical crisis are just appalling and outrageous.

“Yet that’s what happened after Rosamaria Hernandez underwent emergency surgery. And now, she has been ripped away from her family, nearly ten years after she came to the United States when she was just three months old.

“We are better than this. Prioritizing the swift detention of a ten-year-old girl with cerebral palsy who is recovering from significant surgery is a grossly misplaced priority by our government.

“While Rosamaria is in this unjust situation, she must be provided with legal representation, due process protections, and reasonable accommodations that meet her needs as a person with a disability on U.S. soil,” said Peter Berns, CEO, The Arc.

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The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), 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 IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

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Congress Must Reauthorize CHIP Now with Bipartisan Support for Funding

/in /by The Arc

The Arc supports the House of Representatives’ bipartisan policy agreement to extend the funding for the Children’s Health Insurance Program (CHIP). CHIP is critical to providing health insurance to over 9 million children in the United States and has helped to reduce the uninsured population of children to historic low levels. It is urgent that Congress act to extend the funding for CHIP before states exhaust current funding. If the program expires, states will be forced to send notifications to families about pending loss of health insurance coverage for their children. These notifications and the potential loss of health coverage will create anxiety and concern among families who depend on CHIP for affordable health insurance coverage.

The Arc is concerned that the House is preparing to move forward with bipartisan agreement on the policy but strong disagreement on provisions for how the bill will be paid for. On principle, The Arc does not support provisions that pay for bills that hurt Medicaid or Medicare beneficiaries or beneficiaries of other important programs when extending equally critical programs. We urge the House of Representatives to continue to seek provisions with bipartisan support to pay for the CHIP funding extension. It is critical that Congress act to maintain this program and ensure that children continue to have access to the health insurance they depend on.

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The Arc and Walmart Foundation: A Successful Year Assisting People With Intellectual and Developmental Disabilities Find Jobs in the Community

/in /by The Arc

A year ago, The Arc announced the exciting news that it had been awarded $245,000 by the Walmart Foundation to support workers with intellectual and developmental disabilities (IDD) to enter the workforce. The Arc@Work, The Arc’s employment program, quickly got to work with chapters from around the country to make a dent in the unemployment rate for people with IDD, one job placement at a time.

Shortly after acquiring the grant, The Arc awarded 16 of its chapters subgrants. Each grantee was then charged with developing innovative programs that place job-seekers with IDD in competitive, integrated employment within their communities. Chapters included were UCP Seguin (IL); The Arc of the Midlands (SC); The Arc of Spokane (WA); The Arc of Anchorage (AK); The Arc of Montgomery County (MD); The Arc of El Paso (TX); The Arc of Monroe County (NY); St. Louis Arc (MO); The Arc of Chester County (PA); Berkshire County Arc (MA); Star, Inc. (CT); The Arc of North Carolina (NC); The Arc Davidson County and Greater Nashville (TN); VersAbility (VA); The Arc of Bristol County (MA); and ADEC (IN). By the end of the grant cycle, The Arc had reached and even surpassed many of the grant’s objectives. As of September 2017, nearly 480 workers with disabilities had secured employment at nearly 360 companies under the program. Additionally, nearly 1,240 individuals with IDD had undergone training to better prepare them to enter the workforce. Several success stories emerged as the year progressed, including this one about a self-advocate named Danielle from The Arc of Monroe County in Rochester, New York:

When Danielle first began employment services, she exhibited low self-confidence. And throughout the job development process, Danielle struggled with social interactions ranging from phone calls to interviews. As she experienced her first career fair, job interview, and informal meetings with potential employers, her confidence started to grow.

Eventually Danielle received a call for an interview at a local senior facility that would result in a pivotal change in her life’s course. The day before she was scheduled to interview, Danielle and her employment specialist practiced interview questions. The following day, Danielle was stellar during the interview process and performed the best she ever had! Her employment specialist knew when they walked out of the building that she would be offered the job. Danielle was able to engage the interviewer in a funny story and her demeanor and the content of her answers were on point. The following week Danielle was offered a job!

Danielle has been working at the senior facility now for 10 months. Her transformation has been incredible. In late June, Danielle’s astounding professional and personal growth was recognized at an awards ceremony sponsored by The Arc of Monroe County.

Based on this year’s achievement, The Arc was awarded an additional round of funding this past spring. With this support, The Arc hopes to build upon the success it began in 2016.

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Community Matters for ALL

/in /by The Arc

By: Nicole Jorwic, Director of Rights Policy, The Arc of the United States

During the recent fights to save the Medicaid program from devastating cuts and fundamental restructuring, the home and community based services (HCBS) that individuals with disabilities and their families rely on were in greatest jeopardy.

These services include everything from residential supports, day supports, and employment services, to personal attendant care. This is because under federal Medicaid law, HCBS are OPTIONAL while other services such as institutional services are MANDATORY. So if the cuts included in the recent health care bills would have made it down to the state level, HCBS would have been the first thing on the chopping block. This new reality would have been devastating to individuals and families.

Those HCBS dollars are the ones that, over the last several decades, have funded the desperately needed shift from institutional placements and segregated services for individuals with disabilities to a full life in their communities.

What is important to YOU about community living?

Share your story!

Community Matters!

I have been lucky in my life to be a part of a community that involved all individuals in every aspect of the community, including my brother Chris who has autism. Chris is 28, lives in Illinois and receives Home and Community Based Services through the Medicaid program to remain in the same community where he has lived his whole life.

Not only do HCBS benefit the individuals with disabilities who receive them to stay in their community, it benefits every community member. Because of the services that Chris receives he is able to live in his home, do things that he chooses during the day out in the community, interacting with people who do not have disabilities, and gets the support that he needs to communicate through typing. Chris has a full life, and Medicaid HCBS have made that possible. However, it is never lost on me that if Chris had been born 20 or 30 years earlier, his life would most likely look very different because of his significant level of needs. Chris would have languished in an institution, away from his family, friends and his COMMUNITY never learning to express his wants, insights and amazing sense of humor. This knowledge is why I feel so passionately about making life in the community a reality for all individuals with disabilities, no matter their level of need.

The disability community showed our strength during the fights to protect Medicaid, and now we must rise up again to show the importance of ensuring that HCBS dollars are spent in the community and not in settings that isolate individuals from interacting with all parts of their communities. We need to show that life in the community is possible for ALL! The best way to send that message is to share stories about why community matters in YOUR life, and what your life looks like in the community.

Chris has already written his own story and submitted it, please take a moment to do the same. You can enter your information here. We will use these stories to show the need to increase the investment in HCBS dollars and to ensure that capacity is built to support every individual in their communities.

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Boston University Sargent College and The Arc of the United States Approved for $50,000 Funding Award by the Patient-Centered Outcomes Research Institute

/in /by The Arc

(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 LogoBoston 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.