Choosing Between a Paycheck and Health: New Report on Paid Family Leave and the Disability Angle

by The Arc

Washington, DC –Today, The Arc and the Georgetown Center on Poverty and Inequality are releasing a first of its kind paper outlining why paid family and medical leave is a necessity for the economic security and stability of people with disabilities and their families.

The need for paid family and medical leave is universal. Nearly all of us will need paid leave at some point – to care for a family member’s or our own serious medical condition, or to welcome a new child into a family. Missing from the national conversation is the disability angle. One in five Americans live with a disability. Yet the reality is, in the U.S. workforce, only 1 in 7 workers has access to paid family leave to care for a family member with a serious health condition. Roughly 2 in 5 workers report they lack access to any paid leave.

“Millions of workers in our economy either have a disability, or have a family member with a disability. Yet largely under the radar has been the disability community – too many people are being forced to choose between a paycheck and their own health or a family member’s health. This paper aims to elevate the disability angle on paid leave, a national issue with growing momentum,” said co-author TJ Sutcliffe, Director, Income and Housing Policy, The Arc.

“If policymakers are serious about improving employment outcomes of people with disabilities, they should work to establish a comprehensive and inclusive paid family and medical leave program,” said co-author Kali Grant of the Georgetown Center on Poverty and Inequality. “We know paid leave has wide-reaching benefits, and that’s particularly true for people with disabilities and their families.”

Many people in the U.S. struggle to get by and pay for basics. That’s particularly true for people with disabilities and their families, who are more likely to live in poverty, have limited savings to fall back on, and face added disability-related expenses and barriers to work.

The paper found that households with one or more members with a disability have an average household income that is only about two-thirds that of households where no one has a disability. As highlighted in the paper, according to the National Disability Institute, 31% of people with disabilities say it is “very difficult” to cover their monthly expenses, compared to 15% of people without disabilities. And 4 in 5 people with disabilities lack any sort of rainy day fund.

Workers with disabilities are particularly likely to be in part-time, low-wage jobs that often don’t offer even basic benefits – much less paid family and medical leave. Over 2 in 3 part-time workers don’t have even one sick day. Workers with disabilities are twice as likely as workers without disabilities to be part-time.

“By offering job-protection, continuing health coverage, and temporary replacement income, comprehensive paid leave has the potential to ensure financial stability for the millions of working families with a member with a disability,” said Grant.

To fully address the needs of all Americans, including people with disabilities and their families, the paper recommends that a national paid leave approach should, among other things, be accessible to all working people and reflect a modern definition of family, cover all the major reasons that people need to take leave (one’s own health, a family member’s health, a new child), replace sufficient wages so that people can make ends meet, be for long enough to promote positive outcomes, ensure that people can keep their jobs and health insurance, and include education and outreach that is fully accessible to people with disabilities.

“Knowing that your job will be there for you if you take paid leave is a must for nearly all of us. And disability knows no geographical, socio-economic, or political boundaries. Other countries have done better, and American workers, including people with disabilities and their families, desperately need better,” said Sutcliffe.

Hear one family’s story about paid leave, and meet others who have personal experience with paid leave.

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

The Georgetown Center on Poverty and Inequality (GCPI) works with policymakers, researchers, practitioners, and advocates to develop effective policies and practices that alleviate poverty and inequality in the United States. Further information about GCPI and their Economic Security and Opportunity Initiative (ESOI) is available at www.georgetownpoverty.org.

The Arc on the DACA Announcement: “Ending DACA is an assault on community inclusion”

by The Arc

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.

Are you #ABLEtoSave?

by The Arc

Are you or your family member with a disability #ABLEtoSave? Now is the time to find out if an ABLE account should be a part of your plan for the future.

What is an ABLE account?

This new type of account enables some individuals with disabilities to save money for disability related expenses, without losing important federal benefits. ABLE accounts are similar to college savings plan accounts but are not the same as those accounts with different rules and restrictions.

Less than three years after the ABLE Act was signed into law, twenty-eight states have launched ABLE programs. According to the ABLE National Resource Center, over 10,000 accounts have been opened across the country and there are over $25 million in assets under management by ABLE programs.

Can I open an ABLE account and how do they work?

The Arc’s National Policy Matters on ABLE Accounts answers your questions about who is eligible to open an account, how the accounts work, what the contribution limits are, what types of expenses the funds can be used for, how the accounts impact federal, means-tested benefits, what happens to money remaining in the account, and more.

Eligible individuals can open only one ABLE account in their home state or another state program. Some, but not all, states allow nonresidents to open accounts in their programs. Visit the ABLE National Resource Center to learn about the different state programs.

An ABLE account can be an important part of a future plan. To learn more about creating a financial plan for the future, visit The Arc’s Center for Future Planning.

This Week is the 52nd Anniversary of Medicaid and Medicare: The Irony of Celebration During Times of Attack

by The Arc

By: Nicole Jorwic, Director of Rights Policy

This week in July is always a big one, this year the disability community came together to celebrate the 27th anniversary of the signing of the Americans with Disabilities Act and the 52nd anniversary of the Medicaid and Medicare programs. But a large looming shadow hung over these celebrations, the current healthcare proposals in the House and Senate.

Medicaid Anniversary

During the past six months, most of my professional life has been consumed by the fight to save Medicaid. Today I was honored to speak as a sibling and professional at a Capitol Hill event celebrating the 52nd anniversary of Medicaid and Medicare, to highlight why we must continue our fight to SAVE MEDICAID.

My Remarks:

My name is Nicole Jorwic, I am the Director of Rights Policy at The Arc of the United States. The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.

I am here today though, as a sister. My brother Chris will be 28 years old tomorrow and has autism, he is the reason that I do the work that I do, and as a Medicaid recipient, he is one of the millions of individuals at risk if the proposals in the House and Senate healthcare reform bills become law.

Chris and Nicole

We know the numbers – between 22-32 million will lose coverage, millions will lose Medicaid and anywhere from $202 billion (in the “skinny repeal”) to $836 billion (in the House bill) in cuts to federal Medicaid spending. But those numbers represent people, they represent Chris, they represent the 43 heroes from National ADAPT that were arrested last month after staging a die in at Senator McConnell’s office.

That’s right, a die in because Medicaid is literally life and death for people with disabilities. I was lucky enough to be there in solidarity with National ADAPT last month and as I watched people who I respect and admire being pulled from the wheelchairs they use, literally putting their bodies on the line for people like Chris, I wept.

The current proposals quite simply devalue groups of human beings, gutting the Medicaid program, a program that over 10 million people with disabilities and families like mine rely on, and they show that the drafters of this legislation don’t see the value in investing in the lives of the poor, the aging population, pregnant women, people with disabilities, including my Chrissy.

Medicaid is so much more than a health program, it funds long term supports and services that allow people with disabilities to live their full life in the community. Medicaid funded the communication device that gave my nonverbal brother a voice, so that he can advocate for himself. Medicaid funds the day support services that allow my mom, a college professor, and my dad, a small business owner, to remain in their jobs.

Siblings

Families like mine started The Arc over 65 years ago to get people OUT of Institutions and included in their communities, and now those antiquated and segregating services may be the only thing left. This is because institutions and nursing homes remain mandatory services, while home and community based services are optional, and will therefore be the first cut when the devastating federal cuts to Medicaid come to the states. We cannot let that happen, we must SAVE MEDICAID. People’s lives literally depend on it. Chris’ does.

The proposals to decimate the Medicaid program to provide tax cuts to corporations and the wealthy is morally reprehensible. As an advocate and Chris’ sister I will do everything I can to stop the current healthcare bills and protect the integrity of the Medicaid program that we are here celebrating today.

Learning From Our Peers: Advice on Organizational Transformation From Those Who Have Done It

by The Arc

As more community-based providers of supports and services to people with intellectual and developmental disabilities (I/DD) strive to reinvent themselves to offer inclusive opportunities and keep up with Employment First, WIOA, CMS Final Settings Rule, DOJ’s application of Olmstead to employment, and expectations of the ADA generation, organizational leadership may find themselves wondering how to accomplish such a feat. Where’s the finish line? Where’s the starting block?

The Arc believes that people with intellectual and developmental disabilities belong in the community and have fundamental moral, civil and constitutional rights to be fully included and actively participate in all aspects of society. The Arc is pleased to be working toward finding and sharing information to support its chapters on their journeys toward community employment with leading employment researchers as a sub-grantee of the Rehabilitation Research and Training Center (RRTC) on Advancing Employment for Individuals with Intellectual and Developmental Disabilities, a project of ThinkWork! at the Institute for Community Inclusion at University of Massachusetts – Boston on a five-year National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) grant aimed at employment of people with I/DD. As part of this collaboration, staff from The Arc co-conducted interviews with leadership from eight organizations which have transformed their employment service delivery from sheltered work to competitive community employment. A brief sharing advice from those interviews was recently released telling us to Commit. Plan. Engage. Implement.

The next step in this collaboration is an intervention aimed at service providers to aide them in transforming their sheltered workshop models to community-based employment programs. This intervention will provide best practice information and other resources to service providers via a comprehensive toolkit.

We are currently looking for chapters to participate in our intervention pilot this summer. The pilot will be six weeks in duration and will consist of reviewing the toolkit, preliminary planning and implementation of pertinent best practices, and providing feedback to The Arc national staff to ensure that the final version of the toolkit is useful and will best support organizations with implementing the conversion process. If you are interested in learning more or participating in the pilot process, please contact Jonathan Lucus, Director of The Arc@Work at: lucus@thearc.org or at 202.534.3706.

The Timeline Has Changed, But Threats to People with Disabilities in Senate Health Care Reform Efforts Remain

Washington, DC – The Arc released the following statement as Senate Majority Leader Mitch McConnell pulls the Better Care Reconciliation Act, and announces an upcoming vote on a repeal of the Affordable Care Act without an immediate replacement:

“Make no mistake – the Medicaid program and the home and community based supports that people with intellectual and developmental disabilities rely on to live independent lives were on the brink of destruction. As the disability community battled against this effort over the last several months, we have shown our strength, our power, and I thank each and every advocate who has stepped up in this fight.

“This is not over. As Senate Majority Leader McConnell considers his next steps regarding repeal of the Affordable Care Act, we are reminded of the 2015 plan to repeal and not replace the Affordable Care Act. The Congressional Budget Office analysis showed that under that proposal, by 2026, 32 million people would lose health insurance and premiums would double.

“We know there will be further threats in the future, which is why we remain vigilant in our advocacy efforts. Congress is already doubling down on slashing the Medicaid program – today, the House unveiled its budget resolution that includes sweeping changes to Medicaid, Social Security, and Medicare.

“This is going to be a long road, but one that people with disabilities, their family members, support staff, and friends will navigate together. We must unite and reject cuts that will take away the dignity and independence of people with disabilities. This is the civil rights fight of our time, and we will remain vigilant to protect all that has been built to ensure the inclusion and equality of people with intellectual and developmental disabilities in our society,” said Peter Berns, CEO, The Arc.

The Arc Warns that the Senate Republican Health Care Legislation Continues to Pose a Severe Threat to People with Disabilities

by The Arc

Washington, DC – The Arc released the following statement following the release of the updated Senate Republicans’ health care legislation discussion draft:

“A new draft, new talking points, same devastating impact on people with intellectual and developmental disabilities. It is disheartening to know that Senators were in their districts for the last week, yet the pleas of their constituents with disabilities have been ignored with the latest draft of this legislation. This response to the extensive and impressive outreach from the disability community is an insult to people with disabilities and their families.

“The Better Care Reconciliation Act is an assault on people with disabilities and we implore Senators to do the right thing and oppose this bill. A vote in favor of this bill is a vote against the progress of the disability rights movement and constituents who rely on Medicaid for their independence,” said Peter Berns, CEO of The Arc.

On June 22, 2017, the Senate Budget Committee released a discussion draft of health care reform legislation, the “Better Care Reconciliation Act of 2017” (“Senate bill”). The Congressional Budget Office (CBO) released an analysis of the cost of the bill and the impact on health care coverage. CBO found that at least 22 million fewer individuals would have health care coverage by 2026. CBO also found that the Senate bill cuts Medicaid by $772 billion over 10 years, but the most severe cuts do not begin to take effect until 2025. Starting in 2025, the cuts are billions more than the cuts in the House bill and would increase significantly over time. CBO found that, compared to current law, Medicaid would decrease by 35% in 2036.

The current discussion draft from the Senate did include a woefully inadequate home and community based four-year demonstration program for rural states.  A total of $8 billion is available over four years.  In contrast, the discussion draft retains the $19 billion dollar cut made to the Community First Choice Option which is a program available to any state that chooses the option with no end date.
The Arc advocates for and serves people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Join us at the 2017 Back To School Carnival on Saturday, August 5th

Join us at the Back to School Carnival!  This event is free and open to the public!

The Lyric Theatre hosts the 2017 Back To School Carnival on Saturday, August 5 11AM – 3PM. Come to The Lyric to celebrate the start of the 2017-2018 Fayette County Public School Year and enjoy games and activities.  Free school supplies and popcorn!

Date: Saturday, August 5, 2017

Time:  11:00am to 3:00pm

Location:  The Lyric Theatre & Cultural Center, 300 East Third Street, Lexington, KY

Website:  http://www.lexingtonlyric.com/event.php?id=960

SSI Makes Allowances for Student Finances

by The Arc

By Mary L. Waltari, Esq., Special Needs Alliance

Students with disabilities and their families sometimes worry that the very process of becoming educated—with an important goal being increased economic independence—can reduce SSI (Supplemental Security Income). Probably not. The Social Security Administration wants to encourage self-sufficiency and has guidelines that, in many cases, will enable individuals receiving SSI to continue their education without diminishing monthly payments.

SSI is a monthly cash payment made to eligible individuals with disabilities and, in many cases, it’s fundamental to their financial security. It’s a means-tested benefit, and until a child reaches the age of 18, parental income and assets are evaluated when determining qualification. Since an individual may not have more than $2,000 in “countable assets,” most minors are ineligible. However, once they reach 18, family assets are no longer considered, and many individuals with disabilities begin receiving SSI at that point. At the same time, many of them continue with high school education until the age of 21. Upon graduation, they may attend vocational training or college. While doing so, they may work a part-time job or receive financial aid, including room and board.

Protected Savings

Special needs trusts (SNTs), ABLE accounts and Social Security’s PASS (Plan to Achieve Self-Support) are several ways to set aside money for education, among other things. While these savings tools are regulated differently from one another, they enable funds for eligible individuals with disabilities to be accumulated without affecting means-tested government programs.

Monthly Earnings

Student Earned Income Exclusions (SEIE) take summer or part-time jobs into account by disregarding more income for students than for non-students. To be eligible, individuals must be under 22 and “regularly attending school,” which generally means going to classes for at least one month during the quarter to which SEIE applies for at least:

  • 12 hours weekly for high school students;
  • 12 hours weekly for vocational training;
  • eight hours weekly for college students

There are exceptions for illness, and different rules apply to home schooling and “homebound” students.

It’s useful to compare SSI guidelines for students with those applied to others:

  • Non-Students: SSI doesn’t count the first $65 of monthly earnings and half of the remainder, along with a $20 general income exclusion. What’s left reduces SSI dollar-for-dollar.
  • Students: SSI disregards the first $1,790 of monthly earnings, up to an annual total of $7,200. Earnings over $1,790 per month will then receive the same earned income exclusion and general income exclusion available for non-students, after which earnings reduce SSI dollar-for-dollar.

Financial Aid

Any financial assistance covered by Title IV of the Higher Education Act of 1965 or Bureau of Indian Affairs programs isn’t counted as income, regardless of use. Interest and dividends from unspent funds are also exempt. Pell Grants, Federal Work-Study and Direct Loans are just a few of the covered programs.

But it does matter when and how financial aid and gifts from other sources are spent:

  • There’s no effect on SSI so long as funds are spent on education-related needs within nine months of receipt.
  • Funds set aside for education purposes but ultimately used differently are counted as income at the earlier of two points: in the month they’re spent or the month the individual no longer intends to use the funds for educational purposes
  • Funds that are neither set aside for education nor immediately spent for that purpose are counted as income during the month of receipt and counted as a resource the next month.

Student Housing

Since SSI is intended to pay for food and shelter, non-students have their payments reduced when they receive such in-kind support and maintenance (ISM) from other sources. In such cases, SSI may be cut back by up to one-third of the maximum federal SSI monthly benefit, plus $20.

But if a student receiving SSI resides on campus, with room and board covered by parents or financial aid, other rules apply. The school living arrangements will be considered temporary and not categorized as ISM if:

  • the individual is over 18;
  • will return to their permanent address during holidays, vacations or following graduation;
  • and lived at their permanent address for at least one calendar month prior to attending school.

On the other hand, if the student receives free housing and meals at their permanent residence, ISM applies and SSI will be reduced.

The Social Security Administration recognizes that education can be a gateway to independence for individuals with disabilities. Paying attention to these guidelines can ensure that students aren’t financially penalized for their ambitions.

Mary L. Waltari is a member of the Special Needs Alliance, a national nonprofit dedicated to assisting individuals with disabilities, their families and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness and advocate for policies on behalf of people with intellectual/developmental disabilities and their families.

The Arc Responds to Delayed Vote on Senate Health Care Bill That Showed Dangerous Disregard for People with Disabilities

by The Arc

Washington, DC – The Arc released the following statement in response to the Senate delaying the vote on the Better Care Reconciliation Act:

“We are pleased that the Senate is delaying its vote on this dangerous piece of legislation, but we remain vigilant in our opposition to this bill. We commend the Members of Congress who stood up for the rights of their constituents with intellectual and developmental disabilities by opposing the Better Care Reconciliation Act over the last few days. This bill showed a dangerous disregard for the well-being of people with disabilities and those with complex medical needs.

“I want to warn advocates that this is a delay, not a defeat of this threat. The bill is still an assault on the rights of people with disabilities. Any Senator supporting this travesty of a bill will be accountable for the negative impact on their constituents and the irrevocable damage it will do to our community based services system. A vote in favor of this bill is a vote in favor of cutting health care coverage from at least 22 million individuals by 2026. Per the budget report, by next year, 15 million more people would be uninsured compared with current law.

“We will continue our efforts to change the hearts and minds of those who supported this bill and help them understand that their constituents rely on Medicaid for comprehensive health care coverage and long term services and supports that enable them to live full lives in the community. Those are the Senators we need to reach; we need them to realize what is at stake.  Our work is far from over, we will continue to work tirelessly in opposition to this bill. We encourage members of our network to share their stories with their Senators during the upcoming recess,” said Peter Berns, CEO of The Arc.

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