The Arc and Baymont Inn & Suites – A Welcoming Partnership for Job Seekers with Intellectual and Developmental Disabilities: The Billy Jake Story

Billy Jake CelebrationAt the end of 2016, The Arc@Work launched a nationwide partnership with Baymont Inn & Suites. Through this initiative, The Arc@Work is helping individual hotels fill the brand-new Hometown Host position. The Hometown Host ensures guests feel at home and that there is plenty of delicious food throughout the daily breakfast service. The role is a symbol of the brand’s emphasis on neighborly service and dedication to community. The collaboration is a win-win for both organizations: helping individuals with intellectual and developmental disabilities (I/DD) secure a regular job in the community while assisting Baymont hotel owners in finding reliable, passionate employees who can connect with their guests and provide them with a great experience.

In honor of National Disability Employment Awareness Month, The Arc@Work interviewed Billy Jake, the first individual placed through this new initiative at his local Baymont Inn & Suites hotel in Celebration, Florida. Because of his interest in food, this young man initially applied to a local grocery store. Unfortunately, this endeavor did not turn out as he had hoped. Then one day Billy Jake’s job coach, Tre Johnson, informed him of The Arc@Work’s partnership with Baymont Inn & Suites. Thus, began a year of hard work and patience that ultimately landed Billy Jake the Hometown Host position.

During his first few months with the company, Billy Jake admits he “was uncomfortable being around lots of people at my job.” But each time he engaged, he grew a bit more at ease. Also, thanks to these frequent interactions with guests, Billy Jake’s speaking and social skills have improved immensely. His “kind and patient” colleagues have also contributed to his success. He loves it that they “encourage [him] to do better every day.”

Billy Jake now looks forward to waking up every morning and getting ready for work. His days are quite busy, arranging the daily breakfast buffet, ensuring diners’ desires and needs are met promptly, interacting with the hotel guests and colleagues, and, once the breakfast service is over, preparing for the next morning’s service. Then comes his favorite part: munching on goodies made by his colleague Kathy in the hotel kitchen!

Serving guests at Baymont Inn and Suites has increased his self-esteem and has given his life new meaning. In his words, “I feel like this job came along at the perfect time. It is working out wonderfully for me, and I am so grateful to my job coach [for helping] me find it.” Clearly a determined young man, Billy Jake now encourages other job-seekers with disabilities “to pick something they want to do and give it a try. You never know what is possible for you unless you try. If it does not work out, try something else. Never give up!”

Over the last six months, Baymont Inn & Suites has taken steps to make sure the Baymont franchises and the larger community is aware of their interest in hiring people with I/DD. They, like The Arc@Work, understand the positive contributions individuals with I/DD like Billy Jake make, not just in the workforce, but in society as well.

Are you #ABLEtoSave?

Are you or your family member with a disability #ABLEtoSave? Now is the time to find out if an ABLE account should be a part of your plan for the future.

What is an ABLE account?

This new type of account enables some individuals with disabilities to save money for disability related expenses, without losing important federal benefits. ABLE accounts are similar to college savings plan accounts but are not the same as those accounts with different rules and restrictions.

Less than three years after the ABLE Act was signed into law, twenty-eight states have launched ABLE programs. According to the ABLE National Resource Center, over 10,000 accounts have been opened across the country and there are over $25 million in assets under management by ABLE programs.

Can I open an ABLE account and how do they work?

The Arc’s National Policy Matters on ABLE Accounts answers your questions about who is eligible to open an account, how the accounts work, what the contribution limits are, what types of expenses the funds can be used for, how the accounts impact federal, means-tested benefits, what happens to money remaining in the account, and more.

Eligible individuals can open only one ABLE account in their home state or another state program. Some, but not all, states allow nonresidents to open accounts in their programs. Visit the ABLE National Resource Center to learn about the different state programs.

An ABLE account can be an important part of a future plan. To learn more about creating a financial plan for the future, visit The Arc’s Center for Future Planning.

Evidence-Based Practices: Connecting the Dots between Research and Practice

Evidence-Based Practices: Connecting the Dots between Research and PracticeWe often hear the terms “best practice” and “evidence-based practice” used in relation to programs or policies – but what does that mean? How do we know if a practice is promising or evidence-based? A recent article, published in Intellectual and Developmental Disabilities, offered perspectives on strategies to gather and evaluate evidence as well as guidelines to establish evidence-based practice. Through a collaboration with AAIDD, The Arc partnered with the lead author, Dr. Robert Schalock, to develop a brief to educate individuals, families, and practitioners on these concepts in hopes of bridging the gap between research and practice.

Learning From Our Peers: Advice on Organizational Transformation From Those Who Have Done It

RRTC BriefAs more community-based providers of supports and services to people with intellectual and developmental disabilities (I/DD) strive to reinvent themselves to offer inclusive opportunities and keep up with Employment First, WIOA, CMS Final Settings Rule, DOJ’s application of Olmstead to employment, and expectations of the ADA generation, organizational leadership may find themselves wondering how to accomplish such a feat. Where’s the finish line? Where’s the starting block?

The Arc believes that people with intellectual and developmental disabilities belong in the community and have fundamental moral, civil and constitutional rights to be fully included and actively participate in all aspects of society. The Arc is pleased to be working toward finding and sharing information to support its chapters on their journeys toward community employment with leading employment researchers as a sub-grantee of the Rehabilitation Research and Training Center (RRTC) on Advancing Employment for Individuals with Intellectual and Developmental Disabilities, a project of ThinkWork! at the Institute for Community Inclusion at University of Massachusetts – Boston on a five-year National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) grant aimed at employment of people with I/DD. As part of this collaboration, staff from The Arc co-conducted interviews with leadership from eight organizations which have transformed their employment service delivery from sheltered work to competitive community employment. A brief sharing advice from those interviews was recently released telling us to Commit. Plan. Engage. Implement.

The next step in this collaboration is an intervention aimed at service providers to aide them in transforming their sheltered workshop models to community-based employment programs. This intervention will provide best practice information and other resources to service providers via a comprehensive toolkit.

We are currently looking for chapters to participate in our intervention pilot this summer. The pilot will be six weeks in duration and will consist of reviewing the toolkit, preliminary planning and implementation of pertinent best practices, and providing feedback to The Arc national staff to ensure that the final version of the toolkit is useful and will best support organizations with implementing the conversion process. If you are interested in learning more or participating in the pilot process, please contact Jonathan Lucus, Director of The Arc@Work at: lucus@thearc.org or at 202.534.3706.

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.

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

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.

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.

 

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

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?

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!