“Don’t Take Away Javi’s Chance at a Future”: Watch a Parent’s Plea to Eliminate Proposed Medicaid Cuts

by The Arc

WASHINGTON, DC – Today, The Arc released a video which highlights how the House-passed cut to Medicaid funding negatively impact people with disabilities’ ability to live independently. The video features a conversation with Linda and her son, Javi, from Chapel Hill, North Carolina. Javi has autism and Ehlers-Danlos syndrome, a condition that affects connective tissues in the body and causes joint dislocations, bleeding, pain and fatigue. He has had multiple painful surgeries over the past decade and requires medication and other therapies to live independently. Due to his Medicaid-funded medical treatment and supports, Javi was able to attend college and graduate with skills that he can take into the workforce. If federal Medicaid funding is cut, Javi risks losing the supports he needs to be able to work in the community and live at home.

Recently, the House of Representatives passed the American Health Care Act (AHCA), which included over $800 billion in cuts over 10 years to federal funding for Medicaid programs. The Arc is launching this video amidst negotiations in the Senate on this bill, and on the heels of the Trump Administration releasing its first budget proposal with includes an additional $610 billion in cuts to Medicaid.

The AHCA cut would not only force states to cut eligibility for state Medicaid programs, but will also diminish the quality and quantity of services that are provided to people who are already enrolled in these programs. For many people with intellectual and developmental disabilities, Medicaid generally is the only source of funds for them to live and work in the community with friends and families and avoid costly, harmful, and segregated institutions.

“I lay awake at night worrying. Without Medicaid, I don’t even see a future (for Javi),” says Linda in the video. “If I were to say one thing to the President and Congress I would say: Don’t take away Javi’s chance at a future.”

“Javi is living a life of his choosing, contributing to his community and thriving. These drastic cuts to Medicaid could take it all away from Javi and the millions of other people with disabilities who rely on daily supports and services to be in the community. The AHCA takes away independence, dignity, and decades of progress. We must now rely on the Senate stop this catastrophe,” said Marty Ford, Senior Executive Officer, The Arc.

This video is the fifth in a series of videos The Arc is releasing, sharing the personal stories of people with disabilities and their families, and the impact of the Affordable Care Act (ACA) and Medicaid on their lives.

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.

Owning a Home with a Special Needs Trust

by The Arc

By Amy R. Tripp, Esq., Special Needs Alliance

To say that adequate housing options for persons with disabilities is a challenge is an understatement. As a result, in the process of future planning, housing is almost always one of the most important topics. Some people with disabilities would like to continue living in the family home, with appropriate supports, after Mom and Dad are gone, and parents often agree that would best serve their son or daughter’s interest. Other parents anticipate leaving funds that would allow their son or daughter to own appropriate alternate housing. In both cases, it must be determined if it makes sense for the house to be owned by a special needs trust (SNT) that is likely at the center of their plan. And as noted below, individuals and families must also weigh the benefits of home ownership versus renting to determine the best fit.

The short answer is that, in many cases, is does make sense for an SNT to own a home, but there are numerous considerations and caveats that come into play. This is an overview of the rules and issues that can arise when an SNT owns a home.

It is important first to identify what type of trust would own the home. We should distinguish between “first party” and “third party” trusts. A first party SNT is funded with the individual beneficiary’s assets and, after the death of the beneficiary, requires reimbursement to the state for Medicaid services. A third party SNT, which is funded with someone else’s assets, such as an inheritance from a parent or proceeds from a life insurance policy, is more flexible and does not require reimbursement to the state.

Options for Titling Homes

A threshold consideration in deciding whether a residence is better owned by an SNT or the individual is whether that person has legal capacity to hold title on their own and what decision-making supports the person might need. Minors simply cannot hold title and would require a guardian (in some states, a conservator) be appointed. Many adults may also need support to manage home ownership. If an adult is under guardianship or conservatorship, the guardian or conservator would likely have legal authority to manage the property. Many other adults with I/DD would benefit from using decision-making supporters to help them meet the obligations of home ownership.

For an adult with I/DD, home ownership can be empowering, as it is for all of us. The responsibilities of home ownership, as well as the status of a property owner, can have very positive impact. Families should take care to ensure that appropriate decision-making supports are in place.

If direct ownership isn’t practical, leaving a family home to a third party SNT, or buying one with trust assets, protects the property from creditors and leaves financial and maintenance issues in the hands of a trustee.

While a residence purchased by a first party SNT gains these advantages during the beneficiary’s lifetime, the home is subject to recovery by the state upon the beneficiary’s death to the extent of the costs paid by Medicaid.

Finally, it is important to look at who else might be living in the home. If the home is owned outright by a first party SNT, there may be complications if other family members also reside there. Distributions from first party SNTs are supposed to be for the sole benefit of the beneficiary, and this may be interpreted differently by various Social Security offices. Depending on the level of caregiving performed by family members, they may be required to pay rent in order to avoid affecting the beneficiary’s eligibility for government benefits. There may even be issues regarding what maintenance the trust should pay for.

Some trustees, seeking to avoid a first party trust payback, arrange for the SNT to purchase a life estate interest in the family residence. By paying a portion of the home’s value, the beneficiary has a right to live there, rent free, as long as he or she lives. In some states, however, this won’t avoid the Medicaid lien, and other family members residing in the home still may need to pay rent to avoid conflict with the sole benefit rule.

Running the Numbers

Of course, as attractive as the idea is, whether it is practical to plan to provide a house to an adult son or daughter with disabilities after you’re gone comes down to dollars.

Any time the purchase or transfer of ownership of a residence is begin considered, it is critical to prepare a detailed budget which takes into consideration things such as the cost of modifications needed for accessibility, long-term maintenance, utilities, taxes, insurance, and general upkeep. A common planning mistake is for people to create SNTs which purchase homes, only to have the housing costs consume such a large part of the available resources that other important purposes of the SNT are compromised, leading to deterioration of the property and forcing sale at a discounted price.

On occasion the solution may be as simple as finding a roommate. The trend today is for families to consolidate resources and purchase housing that provides for more than one adult. While there are some great examples of these types of arrangements, there are also many situations in which such plans simply don’t work. And many trustees are unwilling to deal with their complexity.

Beyond the numbers, persons with disabilities and their families should consider other pros and cons to homeownership, including whether the person may in the future want to live in a different neighborhood or area, the suitability of the home for future family configurations and the potential for aging in place.

Effect on Benefits

The ownership of property and the payment of housing expenses can impact the government benefits the individual may be receiving, including Supplemental Security Income (SSI) and Medicaid.

Notably, for persons who receive SSI, mortgage payments, property taxes, utilities and other housing costs paid on their behalf by an SNT are considered in-kind support and maintenance (ISM) and will reduce SSI. Good planning can often reduce the impact of these rules, but not always.

Likewise, depending on how a home is titled, the purchase or sale of a home can trigger interruptions or reductions in benefits in the months in which these events occur. While the home is an exempt asset for SSI and Medicaid benefits, the sale of the home in the future, if titled to the individual, will result in converting an exempt asset into countable resources. If the home is titled to the SNT, then the sale of the home would have no impact on eligibility.

Medicaid liens and other estate recovery claims are potential pitfalls when persons receiving benefits own their own homes, or have homes held in some SNTs. When a first party SNT owns the home, extra attention needs to be provided if other family members are living in the home and providing support to the beneficiary. When the beneficiary dies, Medicaid is reimbursed from the remaining assets in the first party SNT. If the Medicaid lien exceeds the balance of the assets in the first party SNT and the house is owned by the SNT, then the house may be lost. This can be a great hardship for some families who provide support and services to the beneficiary.

Conclusion

Housing is always a challenge in future planning for persons with disabilities. Arranging for a stable living environment is a high priority, but the considerations are many and complex, and families and their counselors are becoming increasingly creative as they struggle with the housing shortage. Whether an SNT can or should own a house involves a number of considerations, and families should seek advice from a qualified attorney to ensure that their objectives are met.

Amy Tripp 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.

Trump Budget and Health Care Cuts are Devastating for People with Disabilities

by The Arc

WASHINGTON, DC – Today the Trump Administration released its first ten year budget proposal, and the numbers are devastating for people with intellectual and developmental disabilities (I/DD) and their families. On top of the more than $800 billion in Medicaid cuts already approved by the House of Representatives, the Trump Administration is planning for $610 billion in cuts to Medicaid; $72.4 billion in cuts to Social Security’s disability programs; and hundreds of billions more in cuts to other effective federal programs that are vital to people with I/DD.

“Where we invest our federal dollars is a measure of our values as a nation. Today the Trump Administration showed its cards, and coupled with the devastating Medicaid cuts already approved by the House of Representatives in the health care bill, the deck is stacked against people with disabilities.

“In the last few weeks, I’ve traveled to chapters of The Arc in Maryland, North Carolina, Wisconsin, and even Alaska. Chapters of The Arc sprang up in these communities and across the country decades ago because people with disabilities and their families were appalled by the segregation of people with disabilities in inhumane institutions, and they were determined to make progress. And we have fought for rights, closed institutions, opened up the community and classroom, and paved the way to employment. Two effective programs built on bipartisan policy over the years – Medicaid and Social Security – have been essential to this progress. Medicaid provides health care and long term supports that help make a life in the community possible for many people with disabilities, and Social Security is far too often the only thing keeping the lights on and food on the table for a person with a disability.

“That these proposed cuts come in the very same package that is proposing the largest tax cuts in our nation’s history is simply obscene. Giving $5 trillion in tax cuts that primarily benefit wealthy individuals and corporations while simultaneously threatening the lives of everyday people defies comprehension.

“This budget – this Trump card – along with the health care cards being played in Congress as we speak, will dismantle decades of progress for people with disabilities and their families. So I’m calling on all advocates to do what they have done for decades, band together to put a face on these cuts. Share your story in your community and with your elected officials, and tell them to reject these cuts, before we go back in time to an era of discrimination and isolation,” said Peter Berns, CEO, The Arc.

In tandem with this budget news, The Arc is releasing a video which shares the story of a Maryland family which risks losing access to critical care for one of their children due to impending cuts to federal Medicaid funding. The video features Soojung, whose 11-year old daughter Alice, has Rett Syndrome and relies on overnight nursing services to be able to live at home with her family. Soojung speaks about the challenges she and her husband faced accessing these services, including having their requests turned down by private insurers. After years of waiting and uncertainty, Alice was finally accepted to a Medicaid program that provides her with nightly nursing services. These services have led to a great improvement in Alice’s health, making 2016 the first year of her life without a hospital stay.

For many families like Soojung’s, their health and lives could dramatically worsen if the Trump Administration’s proposed Medicaid cuts became a reality or if the over $800 billion in cuts over 10 years to federal Medicaid funding, proposed in the House-approved American Health Care Act (AHCA), go into effect. These cuts would not only force states to cut eligibility for their Medicaid programs, but would also diminish the quality and quantity of services that are provided to people who are already enrolled in these programs.

This video is the fifth in a series of videos The Arc is releasing, sharing the personal stories of people with disabilities and their families, and the impact of the Affordable Care Act (ACA) and Medicaid on their lives.

o   Meet Bryan

o   Meet Thelma

o   Calvin’s Story

o   If I could say one thing

 

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 Arc@School Releases Report on Special Education Advocacy and The Arc’s Chapter Network

by The Arc

School may be almost out for the summer, but The Arc@School is still in session.  Now in its second year, The Arc@School continues its mission to build the capacity of The Arc’s nationwide network of chapters to provide individual advocacy that helps students with intellectual and developmental disabilities (I/DD) navigate the special education system.  Equal access to education is a fundamental right for all citizens and an important building block for a strong society.  For students with I/DD, a high-quality education can make an enormous difference in the quality of life and degree of independence they enjoy in adulthood. Special education advocacy is instrumental in ensuring that students’ rights are respected and that they receive the services and supports necessary to graduate from high school and pursue post-secondary education and employment.

With these ideals in mind, The Arc@School conducted an investigation of existing special education advocacy practices and published a report entitled Special Education Advocacy and The Arc’s Chapter Network: Findings from The Arc@School.  Students with I/DD, parents, educators, and advocates can find:

  • A brief overview of the Individuals with Disabilities Education Act (IDEA) and the growth of non-attorney lay advocacy in special education;
  • A description of the curriculum, length, and cost of current advocacy training programs, such as Wrightslaw and the Council of Parent Attorneys and Advocates (COPAA);
  • A description of The Arc networks’ current capacity for providing individual special education advocacy;
  • A summary of the current limited academic research on best practices in special education advocacy; and
  • A list of program recommendations that The Arc@School intends to implement in the coming years, such as a suggestion that The Arc@School collaborate with the COPAA, PTI Center, and protection and advocacy networks to ensure that scarce special education advocacy resources reach as many families as possible.

To read the report, please see Special Education Advocacy and The Arc’s Chapter Network.

What Do Moms Need?

by The Arc

Last week, The Arc was excited to join nearly 50 national organizations that co-sponsored the #MomsDontNeed / #LasMamásNoNecesitan Tweet storm. On Twitter, we called attention to recent actions and policies that threaten mothers and families, and highlighted the kind of supports they and all people truly need to protect and advance their economic security, health, and more.

Moms with disabilities, and moms of children with disabilities, do so much. And across the nation, moms are working harder than ever. With Congress considering legislation to devastate our health care system, and with new reports of major cuts in the works to Medicaid, Social Security disability benefits, and other effective federal programs, so much is at stake – for moms, and for all of us. As The Arc celebrates Mother’s Day, here are three things that we know are vital to supporting mothers and their many contributions.

1. Access to Health Care and Long-Term Supports and Services. Health insurance under the Affordable Care Act can make all the difference in the world. Just listen to Lindsay, mother of toddler Calvin, if you’re not sure why. In addition, for many people with intellectual and developmental disabilities, Medicaid provides a range of essential medical and long-term supports and services that make community living a reality and for many, can be the difference between life and death. Unfortunately, the American Health Care Act (AHCA) – passed recently by the House of Representatives and now before the Senate – shows callous and dangerous disregard for the wellbeing of people with disabilities and their families. Among the bill’s many harmful provisions, the AHCA would decimate Medicaid, erase health insurance cost protections for people with pre-existing conditions, and cause people to lose essential health benefits under state waivers. The AHCA is one bill that #MomsDontNeed.

2. Economic Security. For most moms and families of children and adults with intellectual and developmental disabilities, every penny counts. For example, raising a child with disabilities can be tremendously expensive due to major out of pocket medical and related costs, like adaptive equipment and therapies. For many families, earnings from work aren’t enough to maintain a basic standard of living and cover these often-extraordinary disability-related costs. It’s only possible because of income from Social Security’s disability programs, including Supplemental Security Income (SSI). Unfortunately, recent news reports suggest that President Trump’s 2018 budget will propose major cuts to Social Security disability benefits, as well as Medicaid and a host of other programs – totaling $800 billion in cuts. That’s another devastating idea that #MomsDontNeed.

3. Paid Family and Medical Leave. Moms with disabilities, and moms of children with disabilities, know better than most that time is a precious resource. At The Arc, we hear often from moms and dads struggling to get enough paid time off work: to be with a new baby in the Neonatal Intensive Care Unit; to care for a new baby with disabilities when they first come home; to take their son or daughter to medical appointments, therapies, and after school programs; to attend IEP meetings and other school appointments – and so much more. And while we all love Wonder Woman, let’s face it, moms get sick, too. Moms shouldn’t have to choose between a pay check and a child’s health, or a pay check and their own health. Not moms, not anyone. That’s why The Arc is joining the call for a robust federal paid family and medical leave program. We hope you’ll #JoinOurFight!

“Don’t Take Away Our Independence”: Watch Thelma as The Arc Denounces Massive Cut to Medicaid

by The Arc

WASHINGTON, DC – Today, The Arc released a video which highlights how the House-passed cut to Medicaid funding (which exceeds $800 billion) will negatively impact people with disabilities’ capacity to live independently. The video features a conversation with Thelma, a long-time Washington, DC resident who relies on Medicaid to employ a health aid who helps her perform daily household tasks that she can no longer perform by herself. She, like many others in the disability community, fears that reduced federal funding for Medicaid will limit her ability to hire attendants or access other services she needs to live independently, in the community in which she has lived since her youth.

The video comes on the heels of the House of Representatives passing the American Health Care Act, which included over $800 billion in cuts over 10 years to federal funding for Medicaid programs. This cut would not only force states to cut eligibility for state Medicaid programs, but will also diminish the quality and quantity of services that are provided to people who are already enrolled in these programs. For many people with intellectual and developmental disabilities, Medicaid generally is the only source of funds for them to live and work in the community with friends and families and avoid costly, harmful, and segregated institutions.

“Thelma is part of her community because of Medicaid. And her community is Washington, DC, right in the backyard of where Congress is considering dismantling the program that provides services and supports to Thelma and millions of other people across the country. Every member of the U.S. Senate needs to hear Thelma’s plea, and listen to the thousands of people they represent who have a disability, or have a family member with a disability, or provide services. This is about peoples’ lives – nearly a trillion dollars in cuts will drastically impact the ability of people with disabilities to be a part of their communities. It is unacceptable and The Arc and our network won’t stand for it,” said Marty Ford, Senior Executive Officer, The Arc.

This video is the third in a series of videos The Arc will be releasing in the coming weeks, sharing the personal stories of people with disabilities and their families, and the impact of the Affordable Care Act (ACA) and Medicaid on their lives. The first video featured nine people who rely on the ACA and/or Medicaid, and each one has a personal message for Members of Congress and the Trump Administration. The second video illustrates how Congress’ proposed changes to the ACA and Medicaid would negatively impact Americans with disabilities and their families. The video features an interview with Toby, Lindsay, and Calvin from Fairfax, VA. Calvin has Bilateral Fronto-Parietal Polymicrogyria and Cerebral Palsy and relies on multiple insurance plans to cover his medical and therapeutic treatments.

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.