Over 10,000 Kentuckians are currently on Medicaid Waiver 1915(c) waiting lists for desperately needed services. This is absolutely shameful and we need to spur the Kentucky Legislature into action! The Arc of Central Kentucky is joining with the Autism Society of the Bluegrass (ASBG) to address this issue. Please join us for a screening of the short film “6,000 Waiting” followed by a joint discussion.
ABLE accounts are helping people with disabilities across the country save money without jeopardizing their benefits, but there are more than 6 million people with disabilities who are not eligible to take advantage of this important savings tool because they acquired a disability after age 25. At the same time, the pool of potential ABLE account holders should be expanded to strengthen the market for state ABLE programs.
The Arc, along with nearly 160 other organizations from across the country, believes that ABLE should be expanded to include more people with disabilities, and has signed onto a letter urging Congress to pass this bill this session.
Beyond the fairness/equity argument for increasing the age of onset, it has now become a financial imperative to pass the ABLE Age Adjustment Act. There are currently thirty-nine states with ABLE programs, yet data collected by the National Association of State Treasurers (NAST) shows that the number of ABLE accounts being opened is much lower than anticipated. The long-term sustainability, availability, and affordability of some ABLE programs for individuals with disabilities are in doubt without this expansion of eligibility (NAST Sustainability Report).
Urge your Senators and Representative to support people with disabilities and their families by cosponsoring the bipartisan ABLE Age Adjustment Act (S. 817/ HR 1874).
Please take a few minutes to call or email your legislators to ask them to support the ABLE Age Adjustment Act (S.817/HR 1874), which would amend Section 529A(e) of the Internal Revenue Code to increase the eligibility for Achieving a Better Life Experience (ABLE) accounts for onset of disability from prior to age 26 to prior to age 46. Together we can advocate to #ExpandABLE and pass the #ABLEAgeAdjustment Act.
For more information about ABLE accounts, please visit the ABLE National Resource Center at www.ablenrc.org.
The Arc and Justice in Aging are interested in speaking with people about their experiences with the Social Security Administration’s (SSA) failure to provide for reasonable accommodations for people with disabilities in the context of continued benefits. SSA requires that Supplemental Security Income (SSI) recipients who are facing suspension or reduction of their benefits file an appeal within 10 days in order to continue to receive their monthly payment while their appeal is pending.
However, SSA is not providing adequate assistance to people with disabilities such as mental health conditions, cognitive impairments, or intellectual disability, who may need help with filing their appeals so they can continue to get their SSI benefits while a decision on the appeal is pending. SSA fails to include with the suspension/reduction notice any information regarding the right to seek a reasonable accommodation (including more time to appeal), fails to inform individuals how to seek assistance at the local office, and even fails to include with the notice the form they need to fill out to appeal.
We are looking at whether SSA is providing help to people who need it and who didn’t get continued benefits. We are interested in speaking with SSI recipients who:
1. Received a notice from SSA that their SSI benefits were being reduced or suspended for reasons other than their disability (e.g., being over the income or resource limits, a change in their living situation). Note: this does not include people who are applying for SSI and are denied, or SSI recipients who are undergoing a Continuing Disability Review or who only received a notice of overpayment;
2. Would have sought continued benefits while their appeal was pending but were unable to do so; and
3. Had trouble processing and acting on information in the SSA notice due to a mental health condition, a cognitive impairment, or an intellectual disability.
If you or your clients are experiencing these issues, please contact Shira Wakschlag, The Arc’s Director of Legal Advocacy & Associate General Counsel to discuss further: Shira@thearc.org; 202-534-3708.
by The Arc
Today, The Arc and the Research and Training Center on Community Living at the University of Minnesota released two new data briefs looking at the work experiences and outcomes of families of people with intellectual and developmental disabilities (I/DD) and the need for paid leave policies. One brief focuses on the experiences of parents raising children with I/DD, while a second brief focuses on the experiences of family caregivers of adults with I/DD.
These data briefs examine subsamples of data from the Family & Individual Needs for Disability Supports (FINDS) Community Report 2017. The intent of this one-of-a-kind survey conducted by The University of Minnesota’s Research and Training Center on Community Living, in collaboration with The Arc, is to understand the experiences of families who provide supports to a family member with I/DD.
The FINDS Survey revealed that, despite the progress that many states have made to increase availability of resources and public funding to provide supports for caregivers and individuals with disabilities, many critical challenges remain. The two new data briefs delve into family members’ employment outcomes and the importance of paid leave as a benefit for family caregivers. The data briefs revealed that:
• Parents raising children with I/DD and working family members who provide support to adults with I/DD report significant challenges balancing work and caregiving and commonly experience negative employment outcomes.
• Caregivers face major gaps in employer supports. Less than half of working family members reported that they were able to take paid time off to care for their family member with I/DD (42% of parents of minor children, 40% of family members of adults).
• A substantial majority (86% of parents of minor children, 85% of family members of adults) thought that offering partially paid leaves of absence from work to meet caregiving responsibilities would be helpful or very helpful.
“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. Often 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.
“This report paints a picture of the day-to-day needs of caregivers and should ignite action by employers, legislators, and advocates to work together to address the gap in support for employees who require paid leave to support their loved one with a disability. This data brief highlights the importance of paid leave for caregivers in our nation and our hope is that by sharing it we will raise awareness around this issue of national importance,” said Peter Berns, CEO of The Arc.
In tandem with the release of these data briefs, The Arc is releasing a new video which shares the personal story of a family that benefited from unpaid family leave. In the first year of his life, Josh had 10 surgeries and many Pediatric Intensive Care Unit (PICU) hospitalizations for respiratory and shunt infections. His parents, Victor and Debbi, did their best to juggle their professional obligations with raising their two older children and Victor’s duties in the U.S. Marine Corps Reserve, all while navigating Josh’s complex medical needs and disabilities.
The Family and Medical Leave Act (FMLA) provided salvation for Josh and his family. With the pressures at work mounting, and the need to focus on Josh’s day to day care, FMLA was their family’s last recourse to getting the time they needed to support Josh. Debbie was able to take unpaid leave while protecting her job and health insurance benefits. Most importantly, she was able to spend time with Josh during his time of need. While the FMLA was invaluable, Debbie discusses how paid leave would have helped even more. She invites others to join her in advocating for paid leave.
About the FINDS Survey
The FINDS survey was implemented primarily using an on-line survey between January and March of 2017. The survey was also made available in English and Spanish paper versions. Caregivers who were family members or friends of people with I/DD and who provided support were invited to participate in this survey. Direct support professionals or other caregivers whose primary relationship with individuals with I/DD was in a paid role were not included in the sample.
More than 3,000 people (3,398) met the criteria to be included in the survey and consented to participate. Caregivers surveyed included respondents from all 50 states, DC, Puerto Rico, and Guam. The number of people responding was large and provides important information about the experiences and outcomes of family caregivers of individuals with I/DD in the United States. However, the sample is not reflective of the racial and economic diversity of the United States.
|by The Arc|
This 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 last week and the House passed the same Senate Budget just this week. 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?
The 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:
- 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.
- 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.
- 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.
- Basic 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.
- 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:
|by The Arc|
Washington, DC – The Arc released the following statement in response to Senator Lamar Alexander (R-TN) and Senator Patty Murray (D-WA) releasing bipartisan health care legislation:
“The Arc commends Senators Lamar Alexander and Patty Murray for their bipartisan work on health care. Together they have developed legislation that continues the cost-sharing reduction payments that help low income people access affordable health insurance for two years. Stopping these payments raises concerns about insurers significantly raising premiums or dropping out of the market place. A short-term extension will help stabilize the market place.
“The Arc encourages Congress to continue to work in a bipartisan manner on health care issues. People’s lives are at stake and we need a solution that supports all citizens including people with intellectual and developmental disabilities and those with significant medical needs. We appreciate the leadership shown by Chairman Alexander and Ranking Member Murray of the Senate Health, Education, Labor and Pensions Committee,” said Peter V. Berns, CEO of The Arc.
The agreement that Senators Alexander and Murray announced would also partially restore federal funding to the Department of Health and Human Services for consumer outreach and education and enrollment assistance. These services, which were cut earlier this year, help people enroll and understand the different plan options available. Restoring funding for these programs will be critical to ensuring the expansion of health care coverage and to reduce the number of uninsured people.
The bill also makes changes to the Section 1332 state waiver process. Section 1332 was included in the Affordable Care Act (ACA) to give states the option to experiment with other health coverage models as long as they maintain access to high quality, affordable health care, and maintain the consumer protections in the ACA. The proposal would keep the consumer protections in Section 1332 but streamlines the administration of the waiver.
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.
|by The Arc|
Parents of Children with Disabilities, The Georgia Advocacy Office, The Center for Public Representation, The Bazelon Center for Mental Health Law, The Arc, DLA Piper LLP, and The Goodmark Firm File Class Action Lawsuit Against State of Georgia
ATLANTA, GA (Oct. 11, 2017) – Today, parents of children with disabilities, the Georgia Advocacy Office, the Center for Public Representation, the Bazelon Center for Mental Health Law, The Arc, DLA Piper LLP, and the Goodmark Law Firm filed a class action lawsuit in federal court alleging that the State of Georgia has discriminated against thousands of public school students with disabilities by providing them with a separate and unequal education via the State’s Georgia Network for Educational and Therapeutic Supports Program (GNETS).
The complaint filed in United States District Court for the Northern District of Georgia, alleges that the State, in denying GNETS students the opportunity to be educated with their non-disabled peers in neighborhood schools violates the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973, and the Fourteenth Amendment to the United States Constitution. For more information about the litigation, please visit www.centerforpublicrep.org/
“The Georgia Advocacy Office (GAO), the independent Protection and Advocacy System for People with Disabilities in Georgia, is demanding the State abandon GNETS and stop segregating youth with disabilities,” said Ruby Moore, Executive Director of GAO. “GNETS programs are a relic of a time where people with disabilities were thought to be uneducable. GAO has and will continue to fight against GNETS and any program or service that unnecessarily segregates people with disabilities.”
GNETS are segregated programs that serve only students with disabilities, housed in entirely separate buildings or in separate wings of neighborhood schools, for students who need services for their disability-related behaviors. In 2016, over 5,000 students with disabilities were placed in GNETS. Most of these students are African-American and 100% of the students enrolled experience disabilities. “The State of Georgia’s segregated GNETS system flies in the face of long-standing Supreme Court
precedent,” said Alison Barkoff, Director of Advocacy for the Center for Public Representation. “The Court recognized long ago that ‘separate educational facilities are inherently unequal.’ And the Supreme Court in Olmstead v. L.C. made clear that the ADA forbids the needless isolation or segregation of people with disabilities, because it deprives them of opportunities like getting an education and social contacts with peers.”
GNETS students are denied access to physical education, art, music, and extra-curricular activities, and many GNETS centers have no library, cafeteria, gym, science lab, music room, or playground. Some GNETS centers are located in buildings that were used to teach African-American students during the Jim Crow era, much of the instruction is performed via online programs rather than with certified teachers, and educational curricula are not aligned with State standards. Accordingly, GNETS students rarely earn a diploma. The GNETS graduation rate is only 10% in contrast to a nearly 80% graduation rate in neighborhood schools. Students in GNETS are physically restrained on a routine basis, nearly 10,000 times in 2014-2016. “Although advertised as ‘therapeutic,’ GNETS are anything but – often student behavior worsens once placed in GNETS because of the harsh and punitive atmosphere in the schools,” said attorney Craig Goodmark. “Decades of research and practice show that students with and without disabilities do best academically and socially when they learn alongside each other.”
Instead of providing local school districts with the resources to offer the services these students need, the State is spending millions of dollars on segregated settings. “GNETS was intended to be a placement of the last resort. Instead, GNETs has become a dumping ground for students whom local school districts do not want to educate,” said Ira Burnim, the Bazelon Center’s Legal Director. “Georgia is the only state in the country to systematically segregate students with disabilities on a statewide basis. This is a plain violation of federal disability laws intended to ensure that students with disabilities are able to learn and receive services in integrated settings along with their peers without disabilities.”
In response to the efforts of a broad coalition of stakeholders seeking to end the illegal segregation of students in GNETS, the Georgia Coalition for Equity in Education, and the U.S. Department of Justice (DOJ) performed a multi-year investigation (www.ada.gov/olmstead/
“The Arc has long fought for students with intellectual and developmental disabilities to be educated in their neighborhood schools with appropriate services, supplementary aids, and supports,” said Stacey Ramirez, Director of The Arc’s Georgia state office. “Georgia’s systemic segregation of students with disabilities is unacceptable to The Arc and its constituents in Georgia. With DOJ’s lawsuit now on hold, the children of Georgia can wait no longer.”
About The Arc
The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities (I/DD) and their families. In partnership with its network of 650 chapters across the country, The Arc works to promote and protect the rights of people with I/DD to live, work, and learn in the community free from discrimination. Through its Georgia state office, The Arc seeks to ensure that students with I/DD throughout the state can meaningfully access the myriad benefits, programs, and services offered to students in neighborhood public schools. To learn more, visit www.thearc.org.
About The Judge David L. Bazelon Center for Mental Health Law
The Judge David L. Bazelon Center for Mental Health Law is a national legal advocacy organization protecting and advancing the rights of people with mental disabilities. The Center promotes laws and policies that enable people with mental disabilities to live independently in their own homes and
communities, and to enjoy the same opportunities that everyone else does. For more information, visit www.bazelon.org.
About The Center for Public Representation
The Center for Public Representation (CPR) is a national legal advocacy center for people with disabilities. For 40 years, CPR has been enforcing and expanding the rights of people with disabilities and others who are in segregated settings. CPR uses legal strategies, advocacy, and policy to design and implement systemic reform initiatives to that promote integration and full community participation. To learn more about our work, visit www.centerforpublicrep.org.
About DLA Piper LLP
DLA Piper is a global law firm with lawyers located in more than 40 countries throughout the Americas, Europe, the Middle East, Africa and Asia Pacific, positioning us to help clients with their legal needs around the world. To learn more, visit www.dlapiper.com/en/us.
About The Georgia Advocacy Office
The Georgia Advocacy Office is Georgia’s designated Protection and Advocacy System. GAO envisions a Georgia where all people have value, visibility and voice; where even the most difficult and long-lasting challenges are addressed by ordinary citizens acting voluntarily on behalf of each other; and where the perception of disability is replaced by the recognition of ability. GAO’s mission is to organize our resources and follow our values and legal mandates in ways which substantially increase the number of people who are voluntarily standing beside and for people in Georgia who have significant disabilities and mental illness. To learn more, visit www.thegao.org.
About The Goodmark Law Firm
Since 1999, Mr. Goodmark has dedicated a majority of his practice to representing families, teachers and students in their pursuit of equality, fairness and justice in Georgia’s schools. To learn more, visit www.goodmarklaw.com.
|by The Arc|
By: Nicole Jorwic, Director of Rights Policy, The Arc of the United States.
October marks National Disability Employment Month – it’s a time to reflect on the progress of making employment for people with disabilities a reality, and to push forward on necessary changes to make that a reality for more individuals throughout the country. People with disabilities have shown their desire to work and thrive in their workplaces and communities. Employers all over the country are also recognizing the potential for people with disabilities in their workplaces and the contributions they can make to the culture of their business, and to the economy.
The Arc@Work is supporting employers large and small across the country with targeted outreach and recruitment, employer staffing solutions, and training and consultation. Much of this work is done on the ground via many of our 650 chapters nationwide.
As businesses continue to show their commitment to adding individuals with disabilities to all levels of their workforce, we must also support individuals with disabilities to develop the skills they need to find the jobs that they desire, AND to build careers in the field of their choice. Individuals with disabilities are succeeding in meaningful careers in a wide range of private businesses, government agencies and nonprofit organizations, while others are becoming entrepreneurs with their own micro-businesses.
It is important to remember why a job is so important to an individual with a disability. My brother Chris is 28 and has autism, and I asked him why getting a job is important to him. Here is his response:
“I think that a job is essential to a person with a disability because it gives us purpose, and common ground to build on with the rest of the world. All my siblings get so much of their identities from their jobs, I should have the same chance. All my brothers and sisters in disability deserve the opportunities to work in our communities, for fair pay, so that we can fulfill our destinies.”
As we work on the federal and state level to align policies and practices to make the road to employment smoother for individuals with disabilities, no matter their level of need, we must remember that a job is an essential part of what gives someone standing in their community. The value in having a response to “what do you do?” is immeasurable for individuals with disabilities across the country, including my brother Chris.
|by The Arc|
Washington, DC – Federal budgets lay out the Nation’s priorities for spending and revenue for the decade ahead. The one passed this week by the House of Representatives reflects priorities that can do real and lasting harm to people with intellectual and developmental disabilities (I/DD). Entitled “Building a Better America,” this FY 2018 budget would most benefit our wealthiest citizens and it would create a far worse America for most people with intellectual and developmental disabilities (I/DD) by prioritizing tax cuts for corporations and the wealthy over funding for critical disability programs.
The House of Representatives officially began the process of developing a budget for Fiscal Year 2018 by passing a budget resolution that includes provisions which would undermine the foundation of community living for people with I/DD for the second time this year. People with I/DD, their families, caregivers, service providers, and advocates have barely had time to rest from battling to protect Medicaid from massive cuts and fundamental restructuring based on similar language from the joint House-Senate budget resolution for FY 2017 earlier in the year.
The Senate is now working on its version of a budget resolution and, once passed, the House and Senate will have to negotiate which version to adopt or whether to jointly adopt a compromise version. Advocates will continue to oppose inclusion of language deemed harmful to people with disabilities.