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Medicaid Matters to Me Letter Writing Campaign Deadline Extended!

The Senate is set to vote soon on the latest version of the Better Care Reconciliation Act. The latest revisions to the bill do NOT change the devastating cuts to the Medicaid program that over 10 million people with disabilities rely on to live and work in their communities. The time is now to take action and tell your Senators why Medicaid Matters to You and Your Family

Take a few moments to write a brief message about how Medicaid impacts your life. Please send those messages in the body of an email to Nicole Jorwic at The Arc of the United States: jorwic@thearc.org. PLEASE INCLUDE YOUR STATE IN THE SUBJECT LINE OF THE EMAIL. We will hand deliver all the printed messages to the Senators from your states this week. So please act fast, e-mails must be received by midnight on Wednesday, July 19 to be printed.

We want to show strong support for Medicaid from all over the nation, but we are particularly looking for letters from the following states:

  • Nevada
  • West Virginia
  • Alaska
  • Louisiana
  • Ohio
  • Arizona
  • North Dakota
  • Kansas
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SSI Makes Allowances for Student Finances

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.

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What Chapters of The Arc Need to Know About Managed Care

By Doug Golub, MediSked President and Co-founder

As an increasing number of states transition individuals with intellectual and developmental disabilities (IDD) to managed care, provider agencies are faced with additional complexities to work with Managed Care Organizations (MCOs), including new billing systems, requirements and expectations.

Provider agencies must also ensure that the process of moving to managed care for long term services and supports (LTSS) is based on the principles of self-determination, person-centered planning, and individualized supports. Under the new structure, there are strategies to be utilized to ensure that the benefits available can be translated into a service offering that reflect each individual’s desired outcomes, goals, and lives.

Understanding Managed Care
Managed care is a model of health care delivery that in theory is meant to lower costs and offer budget predictability for states, improve care coordination with providers, and increase quality and outcomes for individuals. Managed care plans are a type of health insurance plan, in which states contract with MCOs and pay a capitated (fixed) payment on a per member per month basis. Capitated Payments can be made on a full or partial basis. “Full capitation” is managed care for all service types (health, welfare, and safety supports) whereas partial capitation may only cover a portion of the Medicaid services offered to individuals.

Under this model, MCOs assume responsibility and accountability for providing coverage of services and improving outcomes for individuals served. Managed care is the predominant delivery system for Medicaid health care services. A large portion of people with IDD rely on Medicaid to live their lives in the community. Some states have made the move to begin including long term services and supports in the managed care system, which they are referred to as Managed Long Term Services and Supports (MLTSS). Several states are using MLTSS to expand home and community based services using different models. Managed care for LTSS is likely to continue to grow.

As of June 2017, more than half of all Medicaid beneficiaries (waiver and non-waiver) receive their health care from MCOs. As illustrated in Figure 1,19 states currently operate MLTSS programs, with three additional states operating MLTSS within a Financial Alignment Initiative demonstration.[1] Only nine states (Arizona, Iowa, Kansas, Michigan, New York, North Carolina, Tennessee, Texas, and Wisconsin) have IDD populations enrolled in managed care as they are typically the last group to be integrated into MCOs.[2]


Figures 1 & 2. [MLTSS Programs[3], MLTSS Program with IDD Populations Enrolled, – 2017]

MLTSS Programs-April 2017MLTSS Programs-IDD Pop


How this Affects Chapters of The Arc

As more states transition to managed care, provider agencies must be aware of how this change will impact them, and be a part of the implementation process at every level from selecting the MCOs to drafting the contracts. Providers must work to:

  • Be engaged in the process as states move to enroll individuals with intellectual and developmental disability (IDD) into MCOs
  • Prevent the disruption of care
  • Examine the benefits available and translate them to service offerings that reflect what individuals they support want and need
Interoperability 101
Interoperability refers to the ability of systems and devices to exchange data. This allows a fuller picture of a person’s health history to improve outcomes, increase transparency and efficiency, and empower individuals.Interoperability

Providers are responsible for providing a unique set of services and supports to individuals that must be integrated into the 360-degree view of the individual. A large part of the managed care delivery system requires interoperability throughout the network – agencies must have access to information technology, billing, and systems operations to make the transition to MLTSS.[4]

This required move to electronic health records (EHRs) will allow for more frequent and timely communication between the individual’s network with the ability to share information about demographics, enrollments, authorizations, claims, and assessments. The top priority, however, must be to increase quality of care – and ensure there is no reduction in the quality of supports for the individuals.

Providers will be essential for reporting on health and wellness of the individual and providing quality data reporting by analyzing patterns of service utilization, integrating Quality Assurance measures and functions, and generating quality management reports.

Supporting the Transition
MediSked’s dedicated team of subject matter experts have experience transitioning providers into a managed care model to ensure organizations meet the expectations and have the ability to be technologically sound and compliant. Over 29% of MediSked clients currently bill to MCOs across nine states and the District of Columbia. MediSked is working to provide care coordination and business intelligence tools to MCOs across the country, including Partners Health Plan, the nation’s first Fully Integrated Duals Advantage (FIDA) designed explicitly for individuals with IDD and those that support them.

The Arc of the U.S. and MediSked are committed to making the changes to managed care as seamless as they can be. MediSked is a sponsor of The Arc’s national programs.


“The Arc of North Carolina has been in a managed care system since 2012. A managed care system is all about the numbers – MediSked solutions provide the ability to capture, quantify, and measure data of what is happening and when it’s happening. Technology is essential to gather the empirical data to track what is going on. If you can measure it, you can change it.”

– John Nash, Executive Director of The Arc of North Carolina

 


[1] National Association of States United for Aging and Disabilities, Center for Health Care Strategies. (2017). Demonstrating the Value of Medicaid MLTSS Programs. Retrieved from: https://www.chcs.org/resource/demonstrating-value-medicaid-managed-long-term-services-supports-programs/

[2] Ibid.

[3] National Association of States United for Aging and Disabilities. (2017). June 2017 MLTSS Map. Retrieved from: https://nasuad.org/initiatives/managed-long-term-services-and-supports/mltss-map

[4] Centers for Medicare & Medicaid Services. (2013). Guidance to States Using 1115 Demonstrations or 1915(b) Waivers for Managed Long Term Services and Supports Programs. Retrieved from: https://www.medicaid.gov/medicaid-chip-program-information/by-topics/delivery-systems/downloads/1115-and-1915b-mltss-guidance.pdf

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Updated CBO Score of Senate Health Care Bill Confirms the Worst for Individuals With Disabilities

Washington, DC – The Arc released the following statement in response to the Congressional Budget Office’s updated report on the Senate Health Care Legislation:

“The Congressional Budget Office’s (CBO) initial score of the Senate Republican’s health care plan confirms that this legislation will have a dire impact on people with intellectual and developmental disabilities. This bill cuts $772 billion from Medicaid. But the real price we will pay is the health of millions of Americans who rely on Medicaid to live and work in their communities. The second score showed how much deeper the cuts will be long-term. CBO found that compared to current law Medicaid would decrease by 35% in 2036.

“The numbers highlight what we already knew – this bill is dangerous and insufficient to keep people with disabilities insured or support anyone with complex medical needs. 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. As the initial CBO score showed, 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 report, by next year, 15 million more people would be uninsured compared with current law.

“This bill unravels decades of bipartisan work and sets back the progress of the disability rights movement in our nation, all for the purposes of giving a massive tax cut to health insurance firms, pharmaceutical companies, medical device manufacturers, and other entities. The authors of this legislation show a disturbing disregard for the health, wellbeing, and independence of their constituents with disabilities. The numbers paint a bleak picture – these cuts could mean the difference between community living and life in an institution or in some cases the difference between life and death. The cuts to Medicaid included in this bill are an assault on people with intellectual and developmental disabilities and we implore Senators to do the right thing and oppose this bill,” said Peter Berns, CEO of The Arc.

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Disability in America: Second Article in Series Continues Biased, Flawed Reporting

by T.J. Sutcliffe, Director, Income & Housing Policy

In March, The Washington Post launched a new series, “Disabled, America,” to look at how disability “…is shaping the culture, economy and politics…” of rural communities. The first article in the series met with widespread criticism for multiple errors in its data and facts, and for leaving the public with negative, false impressions about Social Security’s disability programs and rural beneficiaries.

Unfortunately, the second article in the Post’s series only went further down the path of reporting by stereotype and anecdote. The article profiles a family in Pemiscot County, Missouri with several members who have disabilities, including a mother and her adult daughter who receive Social Security disability benefits.

Media Matters summed up the outrage at the article’s portrayal of the family as “…a ‘mean-spirited’ and ‘cartoonish’ illustration of the struggles of those living with poverty in rural America.” In Poynter, S.I. Rosenbaum noted that the article failed to provide even basic facts about Social Security’s disability programs, writing that “…without them, in my opinion, the story is incomplete and even misleading.” The Urban Institute pointed out many of those missing facts.

Notably, the second article failed to provide important context, such as the fact that Missouri has a relatively high statewide rate of residents with disabilities, particularly in many rural Missouri counties. In addition, record numbers of Americans today live in multigenerational households, and disability often runs in families for reasons that include genetics, common exposure to environmental hazards, and similar past and ongoing access to (or lack of) health care.

With President Trump having recently proposed over $72 billion in cuts over 10 years to Social Security and Supplemental Security Income disability benefits, reporting that focuses on anecdote, with little to no context, runs the risk of leading policymakers down a dangerous and harmful path. In letters responding the Post’s first article and second article, over 50 national organizations urged Congress to “…ensure that any discussions about how to strengthen the nation’s Social Security system are informed by facts—not well-debunked myths and offensive stereotypes.”

Here’s a round-up of analyses and responses to the second Post article – and if you missed it, be sure to read our round-up of responses to the first Post article, as well.

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Research to Practice Webinar: State of the States in IDD 2017

State of the States LogoAs part of its inaugural Research to Practice series, The Arc of the United States and the American Association on Intellectual and Developmental Disabilities co-sponsored a timely webinar: The State of the States in Intellectual and Developmental Disabilities, 2017 presented by Dr. David Braddock, Senior Associate Vice President of the University of Colorado (CU) System and Executive Director of the Coleman Institute for Cognitive Disabilities. The State of the States in Intellectual and Developmental Disabilities (IDD) Project of National Significance has provided critical information on national and state revenues, spending, and programmatic trends in IDD services and supports for 35 years. The information collected through collaboration with state agencies reveals the longitudinal impact of federal and state fiscal policies on innovations in the support and services system in the states and nation.

The webinar has been archived and can be accessed here. Learn more about the importance of Medicaid to people with disabilities here. Learn more about the State of the States in Intellectual and Developmental Disabilities here.

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New Video: How President Trump’s Budget Breaks a Promise to Protect Social Security and the Families That Rely on It

Washington, DC – Today The Arc and the Center for American Progress released a video showcasing two personal stories about how Social Security is more than just retirement income. Social Security is a system that protects workers and families throughout their lives. If President Trump’s $72.4 billion in cuts to Social Security’s disability programs in his budget were to be implemented, the impact on families like those featured in this video would be dire.

“Social Security Disability Insurance and Supplemental Security Income are part of Social Security and the promise of that program must be honored for Katie, Will, Heather, and millions of people who need to access these basic but crucial benefits. Social Security is far too often the only thing keeping the lights on and food on the table for a person with a disability or a chronic condition.

“Heather, Katie, and Will are terrified by what this budget proposal could mean for them and for people who in the future need these benefits. This budget lays the cards on the table – and advocates across the country need to share their stories with elected officials and urge them to reject these cuts to Social Security,” said Peter Berns, CEO of The Arc.

This video highlights the stories of Will, a child with a disability, and Heather, a woman with terminal cancer. Will and his family relied on Supplemental Security Income (SSI) to pay for medication to prevent his seizures. SSI is part of Social Security that supports children and adults with disabilities. Without SSI, Will’s family wouldn’t have been able to afford his medicine or medical expenses, or meet his basic needs.

Heather was working internationally promoting fair elections and democracy when she got sick. By the time she was diagnosed, her cancer had metastasized and she feared she would end up impoverished paying for her cancer treatments. Social Security Disability Insurance (SSDI) helps American workers like Heather if they are faced with a life-changing disability or illness. Once her cancer spread Heather was unable to continue working. Without SSDI, she wouldn’t be able to afford chemotherapy and the prescription drugs that she relies on to survive.

These stories highlight the value of SSI and SSDI for those families who find themselves in need of additional support.

Share this video with your network to help people understand all that Social Security does to support families across the country.

Join Our Fight – as new threats to the civil rights of people with intellectual and developmental disabilities arise, we want to keep you in the loop with the most up to date information.

Read more about The Arc’s position on President Trump’s proposed budget.

If you are a member of the media and interested interviewing the people in this video, contact Kristen McKiernan, mckiernan@thearc.org or Sarah Bal, bal@thearc.org.

 

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

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Numbers Confirm Worst Fears of People With Disabilities: AHCA Devastating to Medicaid

Washington, DC – The Arc released the following statement in response to the Congressional Budget Office’s report on the House-passed American Health Care Act:

“Millions of people will be impacted by the American Health Care Act if it becomes law – yet astonishingly, Members of Congress voted without sufficient information on the real world impact of their actions. Now we know, and our worst fears are confirmed – 14 million fewer people enrolled in Medicaid by 2026, and $834 billion in spending cuts to Medicaid over a decade.

“The states will be hard-pressed to make up for the loss of funding from the Medicaid program and the per capita cap restructuring that permanently eliminates the federal guarantee to partner in delivering these services. The hole will be vast and it will consume decades of progress in investing in supports and services for people to be served in the community instead of in isolated and segregated institutions or facilities. People with disabilities and their families fear the loss of community based supports and a return to institutional services.

“We are at a critical juncture in our history as a disability rights movement. Now more than ever, people with disabilities, families, professionals in the field, and the general public need to rise up to protect the rights of people with intellectual and developmental disabilities to live a life like anyone else,” said Marty Ford, Senior Executive Officer, Public Policy, The Arc.

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

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Owning a Home With a Special Needs Trust

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 IDD would benefit from using decision-making supporters to help them meet the obligations of home ownership.

For an adult with IDD, 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.

 

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Trump Budget and Health Care Cuts Devastating for People With Disabilities, Including Soojung’s Family

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 (IDD) 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 IDD.

“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.

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