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 (I/DD) 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 I/DD 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 I/DD 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 I/DD 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 (I/DD) 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 I/DD 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: http://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

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.

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

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

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

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

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

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

The Arc Warns that the Senate Republican Leadership’s Discussion Draft of Health Care Legislation Shows Callous Disregard for People with Disabilities

WASHINGTON, DC – The Arc issued the following statement after the release of the Senate Republicans’ health care legislation today:

“This bill will have a devastating impact on individuals with intellectual and developmental disabilities and their families. Make no mistake – people’s lives and independence are on the line.

“More than 10 million people with disabilities rely on Medicaid to live and work in their communities. This bill severely cuts Medicaid. Home and community based services are optional or waiver services for states and, when facing a loss of billions in federal funding, they are what is likely to be cut first. The Arc is outraged that the Senate would undo decades of bipartisan progress building our community based services system with no discussion of the impact on the individuals and families affected by the changes, all for the purposes of giving a massive tax cut to health insurance firms, pharmaceutical companies, medical device manufacturers, and other entities.

“People with disabilities across the country are terrified of what this bill will do to their lives. Medicaid provides access to quality health care and services and supports which help them with the basics of life, such as bathing, dressing, eating, taking medications, managing their finances, transportation and more.  It allows family members to stay employed, knowing that their loved one with disabilities is supported to live independently.  For many it may mean the difference between life and death.  This legislation is an assault on people with intellectual and developmental disabilities and we implore Senators to do the right thing and oppose this bill. A vote in favor of this bill is a vote against the progress of the disability rights movement and constituents who rely on Medicaid for their independence,” said Peter Berns, CEO of The Arc.

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.

It’s Budget Season in Washington – So Far These are the 5 Worst Things for People with Disabilities

By Annie Acosta, Director of Fiscal and Family Support Policy

The President’s proposed Fiscal Year 2018 budget released last month would make unprecedented cuts to public education, health, transportation, housing, and countless other effective federal programs. These massive cuts would affect most Americans in one form or another, and would be particularly devastating to people with disabilities and their families. The budget is titled “The New Foundation for American Greatness” – but the reality couldn’t be more different. Here are five reasons the President’s proposed budget is anything but great for people with disabilities.

  1. More Cuts to Medicaid
    Under the President’s proposed budget, Medicaid, the primary health insurance and long term services and supports program for people with disabilities, would lose $610 billion over 10 years (on top of the over $830 billion in cuts in the American Health Care Act passed by the House of Representatives in March). The combined cuts roughly halve the program’s federal budget by 2027. Medicaid’s “optional” services, expected to take the brunt of such a drastic cut, include prescription drugs, physical therapy, and all home and community based services under state plan and “waiver” programs. Medicaid, including home and community based services, makes it possible for millions of people with disabilities to survive and to live and work in the community.
     
  2. Breaks the Promise on Social Security
    Despite President Trump’s promises to not cut Social Security, the budget also calls for over $72 billion in cuts to Social Security’s disability programs over the next 10 years, including cuts to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Social Security and SSI benefits are modest, but absolutely essential for people with disabilities to put a roof over their head, food on the table, and to pay for their out-of-pocket medical expenses and disability related costs.
     
  3. Slashes Community Living Supports
    President Trump’s proposed budget would sharply reduce – or even eliminate – a wide variety of effective federal programs that help to make a life in the community possible for millions of people with disabilities. These include:

    • Supplemental Nutrition Assistance Program (SNAP), which provides essential nutrition assistance for millions of people with disabilities, would face a 29 percent cut over 10 years. By 2027, over 5 million households that include a person with a disability could lose their SNAP benefit under this cut.
    • Affordable housing programs at the Department of Housing and Urban Development would face a nearly 15 percent cut in 2018. The President’s budget targets the Section 811 Supportive Housing for Persons with Disabilities program for a proposed $25 million cut in 2018. This would leave the Section 811 program with insufficient funds to renew all existing project-based rental assistance contracts thereby placing current lease compliant tenants in 811 properties at imminent risk of homelessness.
    • Councils on Developmental Disabilities, independent living services, and traumatic brain injury services would see their funding to states eliminated and replaced with a new “innovation” program with less than half of the funding for the three programs.
       
  4. Click here to see a listing of discretionary programs and their proposed percentage cuts.

  5. Inadequate, Unworkable Paid Leave
    The President’s budget proposes a new paid leave program that would provide up to 6 weeks of paid leave for mothers and fathers to care for a newborn or newly adopted child. According to the Associated Press, “states would be required to provide leave payments through existing unemployment insurance programs and would have to identify cuts or tax hikes, as needed, to cover the costs.”The proposal has been widely criticized as both unworkable – creating an unfunded mandate to states that would burden and undermine already-fragile unemployment systemsand inadequate. It leaves out the 75% of people who take leave in the U.S. for family caregiving and medical reasons – including people with disabilities who need leave to address their own health, and people who need leave to care for a family member with a disability or illness. In addition, 6 weeks often simply isn’t enough – particularly if you have a disability, are caring for a family member, or have a newborn in intensive care. In comparison, the Family and Medical Leave Act provides 12 weeks of unpaid leave. Finally, benefits would likely be insufficient: on average, state unemployment insurance programs presently only cover one third of a worker’s wages.
     
  6. Uses Bad Math and Benefits the Most Prosperous
    President Trump’s proposed budget purports to cut $3.6 trillion in spending to balance the budget in 10 years, while also offering more than $5.5 trillion in tax reductions. The outsized tax cuts come primarily from reducing or eliminating taxes that are paid predominantly by wealthy households. These include the estate tax, the alternative minimum tax, and individual income tax on income earned through “pass-through” entities. The end result is that the budget would overwhelmingly benefit profitable corporations and wealthy individuals.In addition, the entire budget is based on bad math that virtually all independent economic analysts have dismissed.

    • It assumes massive amounts of new revenue from a 50% increase in economic growth resulting from tax cuts, renegotiated trade deals, and deregulation.
       
    • It claims there will be no deficit after 10 years as dramatic economic growth will allow the government to collect about $2 trillion more in tax revenue. However, the budget doesn’t include the cost of the proposed tax cuts, therefore relying on its tax cuts to both pay for themselves and add $2 trillion in additional tax revenue.

Next Steps in the House and Senate

Federal budgets are statement of our nation’s values – and it’s clear to The Arc that this budget simply doesn’t reflect what most Americans value. Fortunately, the President’s budget merely conveys the Administration’s priorities and is non-binding. The House and Senate must each develop their own budgets and reconcile any differences to implement their budget plans.

The House is presently developing its budget and may release it after the July 4 recess and the Senate could take the House’s budget shortly afterwards. The House budget may include many of the harmful provisions in the President’s Budget outlined above.

The Arc and numerous organizations representing civil rights, human services, and other communities are deeply committed to preventing the passage of harmful budgets. We’re working together to put a face on these proposed cuts and to urge Congress to reject the President’s proposed budget.

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

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.

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 (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 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, 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 (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.

What Do Moms Need?

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!