by: Theresa M. Varnet M.S.W., J.D. (Spain, Spain & Varnet, P.C., Chicago, IL and Fletcher Tilton, P.C., Worcester, MA)

On December 15, 2014, Congress passed the Disabled Military Child Protection Act which allows military families to protect their Survivor Benefit Plans (SBP) by allowing the benefits to be directed to a qualified special needs trust. If there are any funds left in the trust when the disabled beneficiary dies, the funds are paid back to Medicaid for the cost of Medicaid funded services provided to the individual over his/her lifetime.

The Military allows military members who have children with disabilities to participate in the SBP. SBP permits monthly benefit stipends of up to 55% of the military member’s pension to be paid for the benefit of a disabled adult child. Prior to the passage of this Act, benefits had to be paid directly to the adult child. The Disabled Military Child Protection Act will allow the survivor benefit to be paid directly to a “payback special needs trust” for the benefit of a child with a disability. If the benefits are distributed directly to the trust, the beneficiary will remain eligible for needs-based benefits such as SSI and Medicaid.

Beneficiaries of a parent’s SBP can now retain eligibility for Medicaid by assigning the military pension to the qualified special needs trust. A qualified special needs trust is sometimes called a ‘payback’ trust, first party trust, self-settled trust, d4(a), d4(c) trust, or an OBRA’93 trust. It is not the typical 3rd party special needs trust that parents provide in their wills and living trusts. By assigning benefits to a qualified special needs trust, these individuals will now be able to remain eligible for Medicaid which is the primary payer of long term supports and services available to persons with disabilities. Up until now, individuals who received SBP were often locked out of Medicaid funded support programs because their income was deemed too high. If the pension benefits caused him to be over income for Medicaid but did not provide sufficient income for private care, the beneficiary of a SBP was often in a worse off position because of the receipt of this pension. S/he had too much income to qualify for Medicaid but not enough income to meet one’s medical and personal care needs.

It is anticipated that military regulations will be written by the end of this year or by early 2016. Early indications are that the designation to a trust can be made by the military member anytime during his lifetime, but also assignable by the benefit recipient if or when the benefit is being received. Retirees cannot make the assignment now, but hopefully will be able to do so by early next year. We were initially told that there was going to be a narrow window of opportunity to change the beneficiary designation from the disabled child to a trust. We are now told that there will not be a restriction as to when the designation to a trust can be made. Of course, until the regulations are written, we will not know for certain what will be allowed. If you know anyone who may be receiving SBP benefits or could be eligible in the future, it is important to get this information out to them so they are ready to make the change in beneficiary as soon as possible. It is important to meet with an attorney knowledgeable in drafting a ‘payback’ trust. It is critical that the correct type of trust be designated as a beneficiary. If a typical 3rd party special needs trust is used that does not contain the restrictive language required in a payback trust, the assignment will not qualify the beneficiary of the trust for Medicaid and SSI. Parents can find the name of an attorney familiar with drafting qualified payback special needs trusts through the websites for the Academy for Special Needs Planners (ASNP) or the Special Needs Alliance (SNA). ASNP AND SNA are two professional organizations for attorneys who concentrate in this very unique and dynamic area of law.

October is National Disability Employment Month

Nicole Jorwic, J.D. – Director of Rights Policy for The Arc

October is National Disability Employment Awareness Month, a time to reflect on the advancements in making employment for individuals with disabilities a reality, and also, on how much work is left to be done. As the Employment First movement has been sweeping across the country, it is important to remember why a job is so important to an individual with a disability. My brother is 26 and has autism, I asked him why getting a job is important to him, this was 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 in Washington DC and on the state-level to ensure that policies and practices converge to make the road to employment smoother for individuals with disabilities, we must remember that a job is an essential part of what gives someone standing in their community. 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.

We moved from a time when the thought of individuals with disabilities having a job was a dream, through a time when the only options were sheltered workshops, into a new era where there is meaningful and competitive work for individuals with disabilities. The value in having a response to “what do you do?” is immeasurable for individuals with disabilities across the country, including my brother Chris.

The Arc Reacts to Announcement of No Social Security Increase for 2016

Yesterday, the Social Security Administration announced that inflation as calculated under the Social Security Act did not increase last year, and that as a result, monthly Social Security and Supplemental Security Income benefits will not increase in 2016.

“Nearly 65 million Americans, including over 14 million people with disabilities and their families, will see no cost-of-living adjustment in their Social Security and Supplemental Security Income benefits in 2016,” said Marty Ford, Senior Executive Officer, Public Policy.

“While the official measure of inflation did not change in 2015, at The Arc we know that many beneficiaries, including people with intellectual and developmental disabilities, are struggling to make ends meet. Their Social Security and Supplemental Security Income benefits won’t increase in 2016, but their rent, out-of-pocket medical expenses, and other daily living costs may.

“What’s hard to imagine is that some in Congress think that no cost-of-living adjustment is too much, and want to cut our Social Security lifeline. Shockingly, there’s still talk in Congress of adopting an even lower inflation formula in the Social Security Act, so there would be smaller, and fewer, annual benefit increases. And some in Congress are holding hostage 11 million Social Security Disability Insurance beneficiaries who will face a 20 percent benefit cut at the end of 2016 if Congress fails to act. The Arc calls on Congress to strengthen our Social Security and Supplemental Security Income systems, and to reject any cuts to this lifeline for people with intellectual and developmental disabilities,” said Ford. 

Happy 80th Birthday Social Security!

This week, The Arc celebrates the 80th anniversary of our nation’s Social Security system.

Signed into law by President Franklin Delano Roosevelt on August 14, 1935, Social Security improves our lives in so many ways. It provides basic economic security for workers and their families – including children and spouses with disabilities – when a worker retires, dies, or acquires a significant, qualifying disability. It helps people with disabilities who work to enjoy a secure retirement. And it provides access to health insurance through Medicare, enabling many people with disabilities to get the health care they need.

Social Security insures nearly all Americans, or an estimated 165 million workers. Its protections are hard to come by anywhere else: roughly 7 in 10 civilian workers have no long-term disability insurance, half have no private pension, and one in three has no savings set aside for retirement.

It’s hard to imagine what life would be like without Social Security. Benefits average just over $40 per day, but lift about 22 million Americans out of poverty. For most beneficiaries, that $40 per day is most or all of what they have to get by. Many people with disabilities tell us that even a small cut in their Social Security benefits would mean facing terrible choices, like whether to take a prescribed medication or buy groceries.

Social Security has never missed a payment since 1935. Workers pay for Social Security, and count on it being there when they and their families need it. The Arc knows how important it is to sustain Social Security’s record of success, and keep our nation’s promise to today’s workers and beneficiaries, and for generations to come.

Over the last year, The Arc has been on the front lines, defending our Social Security lifeline against shocking attacks and speaking out against harmful benefit cuts. We’re fighting to prevent a devastating 20% across-the-board cut in Social Security disability benefits at the end of 2016. And we offer many recommendations for strengthening Social Security so that the system works better for people with disabilities and stays financially strong for decades to come.

Please join us in making sure this vital system is there for people with I/DD and their families!

Happy Birthday to Two Essential Lifelines!

Millions of Americans with disabilities appreciate the vital contributions of the Medicaid and Medicare programs. They provide access to health care and vital home and community based supports (HCBS). Needless to say, they are essential lifelines for people with disabilities.

As we mark the 50th Anniversary of these important programs we have much to celebrate. Did you know that today for the first time in its history, home and community-based services (HCBS) accounts for a majority of Medicaid long-term services and supports (LTSS) spending? This anniversary gives us the opportunity to celebrate the fact that millions of Americans with disabilities have access health care thanks to Medicare and Medicaid. That’s right, MILLIONS of people. Approximately 9 million low-income seniors and younger people with disabilities are covered by both Medicare and Medicaid, including. These dually eligible beneficiaries have complex and often costly health care needs and rely heavily on these program. The harsh reality is without these lifeline programs, their medical needs would not be met – that alone is a cause to celebrate these essential programs.

For people with intellectual and/or developmental disabilities (I/DD) Medicaid and Medicare are especially critical. Nationwide, state and federal Medicaid together provides over 77.7% of the funding for supports and services for people with I/DD. This effective and cost efficient program is essential for people with I/DD, enabling them to live and work in the community.

Medicaid has evolved over the years just as the needs of people with I/DD. We urge Congress and the states to ensure that it can meet the future health and LTSS needs of people with I/DD and other disabilities. Please join The Arc in wishing Medicare and Medicaid a Happy Birthday – cheers to another 50 years of essential supports for people with I/DD across the nation!

Family Support – Senate Passes Older Americans Act, Expanding Eligibility for National Family Caregiver Support Program

On July 16, the Older Americans Act Reauthorization Act (S. 192) passed the Senate without amendment. S. 192 is sponsored by Health, Education, Labor, and Pensions (HELP) Committee Chair Lamar Alexander (R-TN), Ranking Member Patty Murray (D-WA) and Senators Richard Burr (R-NC), and Senator Bernie Sanders (I-VT).   Among many other things, the bill includes a fix to the National Family Caregiver Support Program (NFCSP) which provides information to caregivers about available services, assistance in accessing services, individual counseling, support groups, caregiver training, respite care, and supplemental services.   S. 192 would extend NFCSP eligibility to older (age 55 and over) caregivers of their adult children (age 19 to 59) with disabilities. The House is expected to take up the measure in the near future.

Family Support – Bills Introduced in Senate and House to Support Caregivers

The bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1719) was introduced in the Senate on July 8, by Sens. Susan Collins (R-ME) and Tammy Baldwin (D-WI). A companion bill (H.R. 3099) was introduced in the House the following week by Representatives Gregg Harper (R-MS) and Kathy Castor (D-FL). The Arc supports the RAISE Family Caregivers Act as it would implement the bipartisan recommendation of the federal Commission on Long-Term Care, that Congress require the development of a national strategy to support family caregivers. The bill would create an advisory body to bring together relevant federal agencies and others from the private and public sectors to advise and make recommendations. The advisory body would identify specific actions that government, communities, providers, employers, and others can take to recognize and support family caregivers, and be updated annually

Rights – White House and Federal Agencies Host Official ADA Commemoration Events

Last week, the White House held a commemoration in honor of the 25th Anniversary of the Americans with Disabilities Act (ADA). President Obama delivered a speech and noted that while there was certainly reason to celebrate, it is “also a chance to address the injustices that still linger, to remove the barriers that remain.” The President described efforts his administration has undertaken to remove these obstacles, including signing an executive order mandating the U.S. government include more people with disabilities in its workforce and to establish the first special advisor for international disability rights at the State Department. The celebration was attended by several prominent legislators, agency heads, and leaders in the disability community, including former Senators Tom Harkin (D-IA) and Bob Dole (R-KY) , former Congressman Tony Coelho (D-CA), Representative Steny Hoyer (D-MD), the House Minority Whip, and Secretary of Labor Tom Perez.   View the President’s speech here, read a transcript here, and see the White House ADA anniversary fact sheet here. In addition, a number of federal agencies hosted their own events:

  • The Department of Justice, the Equal Employment Opportunity Commission (EEOC), and the Access Board celebrated the event with speeches by Attorney General Loretta Lynch, EEOC Commissioner Chai Feldblum, Senator Bob Dole, Senator Tom Harkin and Representative Steny Hoyer. During the celebration, the EEOC and DOJ signed a Memorandum of Understanding (MOU) to strengthen ADA and Genetic Information Nondiscrimination Act enforcement efforts by the agencies. Read more about the event here.
  • The Department of Labor held a series of events including a conversation between Secretary of Labor Tom Perez and disability employment champions Senator Tom Harkin and Delaware Governor Jack Markell.   Watch the video here and see the Department’s ADA webpage here.
  • The Department of Education hosted an event that included a speech by Secretary Arne Duncan, a panel discussion, and outdoor demonstrations of accessible programs and resources. Learn more here.

Click here to see a comprehensive listing of all ADA commemorative events throughout the summer.

Social Security – 2015 Trustees Report Released

Last week, the Social Security Board of Trustees released “The 2015 Annual Report of the Board of Trustees of the Federal Old-Age and Survivors Insurance and Federal Disability Insurance Trust Funds.” The 2015 report finds that Social Security has large and growing reserves. In 2014 Social Security took in roughly $25 billion more (in total income and interest) than it paid out. Social Security’s reserves were $2.79 trillion at the beginning of 2015, and are projected to grow to $2.86 trillion at the beginning of 2020.  The long-term projections of the 2015 Trustees Report improved slightly from the 2014 Trustees Report, with exhaustion of the combined Trust Funds occurring one year later, in 2034. The 2015 Trustees Report also continues to project that the Disability Insurance (DI) trust fund by itself will be able to pay full benefits until the end of 2016, at which point if no action is taken the DI trust fund will be able to pay about 81 percent of scheduled benefits.

Social Security – Attack Averted on Social Security, SSDI, and SSI in Senate Highway Bill

As noted in a statement by Marty Ford, Senior Executive Officer for Public Policy, The Arc applauds the Senate, which last week “…listened to the voices of people with disabilities and seniors, and removed a harmful proposal from legislation to reauthorize our nation’s highways, bridges, and public transportation system. The proposal would have partially funded the bill with cuts to Social Security, SSDI, and SSI. Social Security must not become a piggybank to pay for unrelated programs, no matter how important, and beneficiaries cannot afford any cuts to these modest but vital benefits. The Arc will remain vigilant and ready to fight back if any similar proposals arise as Congress continues to debate reauthorization of surface transportation legislation.”