Changes Coming to Waiver Programs in Kentucky

Commonwealth of Kentucky Cabinet for Health and Family Services Department for Medicaid Services

Public Notice of the 1915(c) Assessment Project Notice: Department of Medicaid 1915(c) Assessment Project, Public Notice

The Kentucky Cabinet for Health and Family Services (CHFS) has hired Navigant Consulting. Together they will review Kentucky’s six home- and community-based waiver programs:

• Acquired Brain Injury Waiver
• Acquired Brain Injury Long-Term Care Waiver
• Home and Community Based Waiver
• Michelle P. Waiver
• Model II Waiver
• Supports for Community Living Waiver

The goal of this project is to make these waiver programs better. Three departments in the Cabinet are working together on this project – Medicaid, the Department for Aging and Independent Living (DAIL) and the Department for Behavioral Health, Developmental and Intellectual Disabilities (DBHDID). The project will be completed in two parts. Part One is to review each program and make plans for how to improve the programs. Part Two will be to put the plans into place. Please note: The Cabinet has extended the deadline for Part One of the project. It was June 30th, 2017 but has been moved to a later date. We will let the public know when a new deadline is set.

The Cabinet knows these programs are very important. We will tell you what the project is about. We also want to hear from the people who use these programs. We will give regular updates. We would like to include everyone involved in the programs – people on the waivers, their families, and the providers who deliver services. Our meetings will be open to anyone who wants to learn more.

Our first public meeting will be later this month. We will hold two sessions of the meeting:

• June 22, 2017 from 9-10am
• June 22, 2017 from 1-2pm

Meetings will be held at the Kentucky Transportation Cabinet Conference Center, which is at 200 Mero Street C101, Frankfort, KY 40622. You can join the meeting in person or by webinar.

During these sessions, we will talk about how we plan to do this work. We will also introduce the team working on the project. We will have comment cards at the meetings. You can share ideas or concerns on those comment cards.

For questions, or requests for accommodation due to a disability, please email Lori.Gresham@ky.gov.Thank you for your interest and support.

Medicaid Helps Schools Help Children

Medicaid provides affordable and comprehensive health coverage to over 30 million children, improving their health and their families’ financial well-being.[1] In addition to the immediate health and financial benefits that Medicaid provides, children covered by Medicaid experience long-term health and economic gains as adults.[2] Many children receive Medicaid-covered health care not only at the doctor’s office, but also often at school.

For students with disabilities, schools must provide medical services that are necessary for them to get an education as part of their special education plans, and Medicaid pays for these services for eligible children. And Medicaid’s role in schools goes beyond special education, as it also pays for health services that all children need, such as vision and dental screenings, when they are provided in schools to Medicaid-eligible children. Schools can also help enroll eligible but unenrolled children in Medicaid or the Children’s Health Insurance Program (CHIP), and connect them to other health care services and providers. Medicaid also helps schools by reducing special education and other health care-related costs, freeing up funding in state and school budgets to help advance other education initiatives.

Capping and cutting federal Medicaid funding would jeopardize critical health-related services for students.Capping and cutting federal Medicaid funding, as the House Republicans’ American Health Care Act would do, would jeopardize critical health-related services for students and put an important source of funds for schools and states at risk.

Leveraging Medicaid for Special Education

The Individuals with Disabilities Education Act (IDEA) ensures that children with disabilities have access to public education in the least restrictive environment based on their individual needs. Under the IDEA, children’s needs are identified in an individualized education plan (IEP), which details the education and related services they need. In many cases the IEP includes services that Medicaid covers for children, such as physical and speech therapy.[3]

Unlike Medicaid, funding for IDEA is appropriated annually and at insufficient levels. Although the federal government committed in IDEA to provide 40 percent of the cost to educate children with disabilities, it has never met even half of that commitment. For example, in 2015, federal IDEA funding covered only 16 percent of the cost to educate children with disabilities, leaving the remaining costs to states and local governments. Since 2009, this cost shift has averaged about $17 billion each year.[4]

Despite the lack of adequate federal funding, IDEA requires local education agencies to prioritize the educational needs of students with disabilities. Without another source of revenue, states and schools must offset the additional costs associated with special education using general education dollars. Medicaid helps fill this gap by providing reimbursement for health care services that are necessary for students with disabilities to succeed in school when the following conditions are met: the services are listed in the child’s IEP; the child is enrolled in Medicaid; Medicaid covers the service; and the school is recognized as a Medicaid provider. Schools’ ability to leverage Medicaid funding ensures that they can provide the wide range of services needed to educate students with disabilities and ensure their compliance with IDEA requirements.

Helping Kids Stay Healthy and Succeed Academically

Medicaid coverage has a significant positive impact not only on children’s health, but also on their educational attainment and job earnings. Children covered by Medicaid during their childhood have better health as adults, with fewer hospitalizations and emergency room visits, research shows.[5] Moreover, children covered by Medicaid are more likely to graduate from high school and college and have higher wages and pay more in taxes as adults.[6] (See Figure 1.)

Medicaid’s role in schools goes beyond ensuring that students with disabilities have access to the medical services they need to succeed. Medicaid provides support for health care services delivered in school, which benefit all children — not just those enrolled in Medicaid. In a recent survey of school superintendents, almost half reported that they use the reimbursement their districts receive for services provided to Medicaid-eligible children to expand health-related services and supplies.[7] This includes programs that monitor the health care needs of eligible children with certain conditions such as asthma and diabetes as well as operating clinics within schools to provide dental care to Medicaid-eligible children.

Medicaid pays for services and supplies provided to Medicaid-eligible children under its Early Periodic Screening Diagnostic and Treatment (EPSDT) benefit. Under this benefit, children and adolescents under the age of 21 have guaranteed access to a robust set of comprehensive and preventive health services, including regular well-child exams; hearing, vision, and dental screenings; and other services to treat physical, mental, and developmental illnesses and disabilities. The EPSDT benefit also covers medically necessary supplies and equipment that help students in schools, such as hearing aids, eyeglasses, wheelchairs, and other assistive technology to help students hear and see.

Connecting Kids to Coverage

Schools serve as an important pathway to coverage for low-income children by helping their families enroll them in Medicaid and CHIP. Schools are natural places to help enroll uninsured children: they’re an easy place to identify uninsured children; they’re trusted places; they’re geographically accessible; they have experience communicating with their communities through established information-sharing methods; and they can collaborate with partners to assist in helping children and their families apply for coverage.[8]

Over half of surveyed school superintendents reported that they had taken steps to increase Medicaid enrollment of children in their schools.[9] Medicaid reimburses schools for their outreach and enrollment activities, which helps both students and schools. Children gain coverage, which helps them stay healthy and succeed in school, and Medicaid reimbursement allows schools to expand health care services and programs.

In addition to using Medicaid to cover costs of outreach and enrollment activities, schools use the program to help connect children to services they need outside school. Forty percent of surveyed school superintendents reported that they use Medicaid funding to facilitate outreach and coordination services to refer children to such services, including mental health services and food assistance.[10]

Cutting Medicaid Would Harm Kids, Local Communities, and State Budgets

In 2015, Medicaid paid for nearly $4 billion in school-based health care services, including both special education and EPSDT services provided outside of special education.[11] (See Appendix Table 1 for state-by-state data.) By comparison, schools received about $12 billion in federal IDEA funding in 2015.[12]

While Medicaid spending on school-based health services represents less than 1 percent of total Medicaid spending, it’s significant for schools. Cutting federal Medicaid funding would reduce the access and quality of care provided to students while also hurting school budgets.

The House Republicans’ bill to repeal the Affordable Care Act, the American Health Care Act (AHCA), would cut federal Medicaid spending by $839 billion over ten years. The AHCA would not only effectively end the Affordable Care Act’s Medicaid expansion but also radically change Medicaid’s financing structure by capping and cutting federal funding by requiring states to choose between a per capita cap or a block grant.[13] That would shift significant costs and risks to states, with the cuts growing larger over time. To compensate, states would have to increasingly cut Medicaid eligibility, benefits, and provider payments. Given the magnitude of the federal cuts, states would likely have to cut funding for Medicaid services provided in schools, which means schools would find it difficult to maintain their current level of special education and health care spending.

Moreover, in states that opted for a block grant, children would likely be left with few federal protections related to their Medicaid coverage because states would no longer have to comply with most federal Medicaid requirements. That would, for example, allow states to no longer cover the guaranteed benefits children receive under EPSDT.

Radically restructuring and cutting Medicaid funding — whether through a per capita cap or a block grant — would thus jeopardize schools’ ability to purchase needed medical equipment, connect children to other health care services, and implement health monitoring programs that benefit the entire school population by keeping all children, not just those enrolled in Medicaid, healthy and successful in school.

In addition to reimbursing schools for direct medical care they provide to eligible students, Medicaid funding helps schools pay the salaries of their health care and ancillary staff who provide important services and support to many students, not just those with Medicaid coverage. In 2017, 68 percent of school superintendents reported that they used Medicaid funding to keep school nurses, school counselors, speech therapists, and other health professionals on staff.[14] Any cuts to Medicaid could jeopardize the benefits these health care professionals provide. Moreover, because school districts are often large employers, Medicaid plays an important role in creating and sustaining jobs in local communities. Radical changes to Medicaid financing could lead schools to layoff school personnel whose salaries are paid by Medicaid.

State education budgets benefit from Medicaid, too. By leveraging Medicaid and federal IDEA funding, states are less likely to have to use general education dollars to pay special education costs. Because IDEA requires school districts to prioritize funding special education, schools would have to shift resources, such as diverting funds from general education or other important areas of the state budget, to absorb a Medicaid funding cut under a per capita cap or block grant. A resulting cut in general education funding could impede states’ ability to help schools implement proven reforms such as hiring and retaining excellent teachers, reducing class sizes, and expanding the availability of high-quality early education — keys to helping children thrive in school.

Appendix

TABLE 1
Medicaid Spending in Schools
State Total Federal
Alabama $34,562,110 $17,281,056
Alaska $4,384,800 $2,192,400
Arizona $42,733,682 $27,049,503
Arkansas $58,648,205 $36,769,009
California $180,286,733 $90,147,654
Colorado $65,214,047 $32,945,196
Connecticut $83,677,404 $41,838,703
Delaware $8,528,600 $4,626,906
Dist. Of Col.* $(8,236,489) $(5,765,430)
Florida $124,715,692 $63,206,315
Georgia $52,097,071 $30,932,107
Hawaii** $0 $0
Idaho $35,770,614 $25,665,305
Illinois $286,388,260 $144,391,000
Indiana $15,939,697 $9,473,111
Iowa $102,106,503 $56,708,832
Kansas $67,095,810 $36,959,435
Kentucky $34,518,428 $20,872,855
Louisiana** $0 $0
Maine $42,800,723 $26,484,778
Maryland $78,895,689 $39,503,532
Massachusetts $146,998,191 $73,506,866
Michigan $250,237,503 $162,144,442
Minnesota $106,433,753 $53,210,621
Mississippi $8,335,706 $4,556,343
Missouri $39,847,998 $19,924,000
Montana $55,034,916 $35,666,244
Nebraska $26,207,529 $13,303,816
Nevada $15,784,497 $10,158,902
New Hampshire $52,973,368 $26,531,270
New Jersey $286,660,460 $143,432,313
New Mexico $30,483,045 $18,044,216
New York $273,563,018 $136,781,511
North Carolina $142,001,148 $87,216,152
North Dakota $1,851,975 $925,971
Ohio $81,546,862 $51,023,143
Oklahoma $2,739,518 $1,706,720
Oregon $5,188,389 $3,300,296
Pennsylvania $253,324,530 $131,095,440
Rhode Island $64,900,209 $32,464,511
South Carolina $33,630,157 $21,429,977
South Dakota $9,661,644 $4,881,539
Tennessee** $0 $0
Texas $444,382,561 $250,343,667
Utah $32,284,475 $21,801,456
Vermont $8,558 $4,810
Virginia $58,719,643 $29,359,835
Washington $9,321,688 $4,664,392
West Virginia $24,694,593 $17,621,320
Wisconsin $187,671,697 $107,416,062
Wyoming** $0 $0
Total $3,954,615,210 $2,163,798,102

Note: The data in this table represent expenditures for school-based services, which can be adjusted and may not include all health care services provided at schools as they may be claimed under a different service type.

*The District of Columbia’s negative balance most likely represents a repayment of a prior year’s school based services expenditures.  In federal fiscal year 2014, the District claimed $5,443,330 in total school-based services, with the federal share equaling $3,810,382.

**In Hawaii, Louisiana, Tennessee, and Wyoming, school-based service expenditures may be reflected in other health service line items on the CMS-64 or could be included in managed care capitation payments.

Source: CMS-64 data compilation

End Notes

[1] Kaiser Family Foundation, “Insurance Coverage of Children 0-18 in 2015,” http://kff.org/other/state-indicator/children-0-18/?dataView=1&currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D.

[2] Sarah Cohodes et al., “The Effect of Child Health Insurance Access on Schooling: Evidence from Public Insurance Expansions,” October 2014, http://www.nber.org/papers/w20178.pdf; David Brown, Amanda Kowalski, and Ithai Lurie, “Medicaid as an Investment in Children: What is the Long-Term Impact on Tax Receipts?” January 2015, http://www.nber.org/papers/w20835.pdf.

[3] Centers for Medicare & Medicaid Services, “Medicaid and School Health: A Technical Assistance Guide,” August 1997, https://www.medicaid.gov/medicaid/financing-and-reimbursement/downloads/school_based_user_guide.pdf

[4] National Education Association, “IDEA Funding Gap,” February 2, 2015, https://www.nea.org/assets/docs/IDEA-Funding-Gap-FY_2015-with-State-Table.pdf.

[5] Laura Wherry et al., “Childhood Medicaid Coverage and Later Life Health Care Utilization,” February 2015, http://www.nber.org/papers/w20929.pdf.

[6] Cohodes et al., op cit.; Brown, Kowalski, and Lurie, op cit.

[7] Sasha Pudelski, “Cutting Medicaid: A Prescription to Hurt the Neediest Kids,” AASA, the School Superintendents Association, January 2017, http://aasa.org/uploadedFiles/Policy_and_Advocacy/Resources/medicaid.pdf.

[8] Shelby Gonzales and Jodi Kwarciany, “Guide to School-Based Outreach for Health Coverage Enrollment,” Center on Budget and Policy Priorities, August 3, 2016, http://www.cbpp.org/sites/default/files/atoms/files/8-3-16health.pdf.

[9] Pudelski, op cit.

[10]Ibid.

[11] Centers for Medicare & Medicaid Services, 2015 MBES Expenditures, https://www.medicaid.gov/medicaid/financing-and-reimbursement/state-expenditure-reporting/expenditure-reports/index.html.

[12] Department of Education, 2015 Congressional Action Table, https://www2.ed.gov/about/overview/budget/budget15/15action.pdf.

[13] For more on per capita caps, see Edwin Park, “Medicaid Per Capita Cap Would Shift Costs and Risks to States and Harm Millions of Beneficiaries,” Center on Budget and Policy Priorities, revised February 27, 2017, http://www.cbpp.org/research/health/medicaid-per-capita-cap-would-shift-costs-and-risks-to-states-and-harm-millions-of.  For more on block grants, see Edwin Park, “Medicaid Block Grant Would Slash Federal Funding, Shift Costs to States, and Leave Millions More Uninsured,” Center on Budget and Policy Priorities, November 30, 2016,  http://www.cbpp.org/research/health/medicaid-block-grant-would-slash-federal-funding-shift-costs-to-states-and-leave.

[14] Pudelski, op cit.

 

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

by The Arc

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

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

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

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

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

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

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

Owning a Home with a Special Needs Trust

by The Arc

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

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

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

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

Options for Titling Homes

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

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

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

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

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

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

Running the Numbers

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

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

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

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

Effect on Benefits

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

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

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

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

Conclusion

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

Amy Tripp is a member of the Special Needs Alliance, a national nonprofit dedicated to assisting individuals with disabilities, their families and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness and advocate for policies on behalf of people with intellectual/developmental disabilities and their families.

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

by The Arc

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

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

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

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

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

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

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

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

o   Meet Bryan

o   Meet Thelma

o   Calvin’s Story

o   If I could say one thing

 

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

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

by The Arc

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

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

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

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

What Do Moms Need?

by The Arc

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

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

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

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

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

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

by The Arc

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

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

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

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

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

The Arc Applauds Supreme Court’s Decisive Rejection of Texas’ “Wholly Nonclinical,” “Outlier” Standards in Determining Intellectual Disability

by The Arc

By: Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel
       Ariel Simms, Criminal Justice Attorney Fellow

In decisively rejecting these “Briseno factors,” the Court embraces the standards-based approach in determining intellectual disability for which The Arc has long advocated. When it comes to matters of life and death, there is simply no room for courts to ground their determinations of intellectual disability in outmoded and baseless stereotypes.

On Tuesday, in the third decision in favor of people with disabilities in the Supreme Court this term, the Court issued a 5-3 decision authored by Justice Ruth Bader Ginsburg in the death penalty case Moore v. Texas. The opinion rejects Texas’ use of stereotypical and outdated factors—rather than well-established clinical standards—to determine intellectual disability in death penalty cases on the grounds that they “create an unacceptable risk that persons with intellectual disability will be executed.” This is a major victory in protecting the rights of individuals with intellectual disability in the criminal justice system and in fulfilling the promise of two Supreme Court cases setting the standard that execution of people with intellectual disability is unconstitutional (Hall v. Florida (2014) and Atkins v. Virginia (2002)).

In Atkins, the Court held that executing defendants with intellectual disability violated the Eighth Amendment’s ban on cruel and unusual punishment. Subsequently, in Hall, the Court rejected an arbitrary cutoff for IQ scores in making the intellectual disability determination and emphasized the importance of courts consulting clinical standards in their analysis. While the Court’s prohibition of the execution of defendants with intellectual disability could not be clearer, some states continue to define intellectual disability in a manner that significantly deviates from clinical standards, resulting in a miscarriage of justice for many defendants.

In this case, Bobby Moore, was convicted of killing a store clerk at the age of 20 in a botched robbery along with two accomplices. He was sentenced to death and challenged that sentence on the grounds of intellectual disability. In 2014, a state habeas court ruled that Moore did meet the criteria for intellectual disability and recommended that the Texas Court of Criminal Appeals (CCA) reduce Moore’s sentence to life in prison or grant him a new trial on the intellectual disability claim. On appeal, however, the CCA ruled that Moore did not meet the criteria for intellectual disability, finding that the lower court had failed to apply the seven-factor test laid out in an earlier Texas opinion, Ex Parte Briseno. The “Briseno factors” rely on stereotypes—rather than clinical definitions—through “the consensus of Texas citizens” in defining intellectual disability and are partly based on the character of Lennie in John Steinbeck’s Of Mice and Men. Using these factors, the CCA found that, among other things, Moore’s ability to live on the streets, mow lawns, and play pool for money precluded a finding of intellectual disability and disregarded several IQ tests Moore had taken with scores in the intellectual disability range.

Decisively rejecting this ruling and referring to the Briseno factors as “wholly nonclinical” and an “invention of the CCA untied to any acknowledged source,” the Supreme Court held unanimously that such factors are impermissible to use in defining intellectual disability in death penalty cases. The Court noted that the Briseno factors were an “outlier” and that Texas did not employ this unscientific approach in determining intellectual disability in any legal issues other than the death penalty: “Texas cannot satisfactorily explain why it applies current medical standards for diagnosing intellectual disability in other contexts, yet clings to superseded standards when an individual’s life is at stake.”

Even Justices who disagreed with other aspects of the ruling (Chief Justice John Roberts, Justice Samuel Alito, and Justice Clarence Thomas) agreed that the Briseno factors “are an unacceptable method of enforcing the guarantee of Atkins.” They disagreed that the CCA had erred in its determination of Moore’s intellectual functioning. The dissent criticized the majority opinion for its reliance on clinical standards as opposed to legal interpretation and precedent, noting: “clinicians, not judges, should determine clinical standards; and judges, not clinicians, should determine the content of the Eighth Amendment. Today’s opinion confuses those roles.”

With the American Association on Intellectual and Developmental Disabilities, The Arc filed an amicus brief in August 2016 in support of Moore and The Arc’s attorneys attended oral arguments at the Court in November 2016. The brief, cited in the Court’s opinion, argued that the state of Texas had distorted the clinical definition of intellectual disability by devising a formula of exclusionary factors that rested heavily on stereotypes and the mistaken notion that an ability to do things like engage in relationships, work, and live in the community precluded a finding of intellectual disability based on simultaneous limitations or challenges. Specifically, the brief noted that the “basic framework of the clinical definition is the constitutionally required standard for determining whether a defendant has intellectual disability.” Jim Ellis, a Distinguished Professor at the University of New Mexico School of Law who represented The Arc in this case said: “The Arc of the United States and its state chapters have played a vital role in protecting the rights of people with intellectual disability” in death penalty cases.

In decisively rejecting these “Briseno factors,” the Court embraces the standards-based approach in determining intellectual disability for which The Arc has long advocated. When it comes to matters of life and death, there is simply no room for courts to ground their determinations of intellectual disability in outmoded and baseless stereotypes.

The Arc has deep sympathy for the family and friends of the victim in this case, and we support appropriate punishment of all responsible parties. The Arc does not seek to eliminate punishment of Mr. Moore or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with intellectual disability and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country.

What’s at Stake at the Supreme Court for People with Disabilities?

What’s at Stake at the Supreme Court for People with Disabilities? The Arc Reviews Judge Gorsuch’s Record on Disability Rights

by The Arc

By: Shira Wakschlag, Director of Legal Advocacy & Associate General Counsel

On January 31, 2017, President Donald Trump nominated Judge Neil Gorsuch of the Tenth Circuit Court of Appeals for a seat on the U.S. Supreme Court. A close review of Judge Gorsuch’s opinions pertaining to people with disabilities reveals a jurist with an exceptionally narrow view of the protections offered by federal disability rights laws—an approach that has led to deeply troubling results for members of The Arc in the Tenth Circuit’s jurisdiction. While Judge Gorsuch is a staunch proponent of the inherent dignity of all human beings, including those with disabilities, during his tenure on the Tenth Circuit he has not been a champion for robust enforcement of disability rights laws that are so crucial to enabling individuals with disabilities to lead dignified lives in the community, free from discrimination.

In cases involving the Americans with Disabilities Act (ADA), Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act, and the Fair Housing Act in which Judge Gorsuch authored the majority or concurring opinion, he almost always ruled against the plaintiff with a disability. Perhaps the most common thread uniting these opinions is Judge Gorsuch’s strictly textualist approach to interpreting laws. This approach leads him to frequently disregard legislative history and Congressional intent in favor of deciphering the “objective” meaning of the law’s text in a vacuum, ultimately resulting in very narrow interpretations of the protections guaranteed by federal disability rights laws.

For example, in Hwang v. Kansas State University (2014), the plaintiff, a professor who had been employed by the university for 15 years, requested to extend her 6-month medical leave for a finite period. Due to a cancer diagnosis and weakened immune system, she sought to avoid a flu epidemic that arose on campus. When her employer refused to make an exception to its 6-month leave policy, the plaintiff sued, alleging disability discrimination under the Rehabilitation Act. Judge Gorsuch found for the defendant employer on the grounds that, as a matter of law, a leave of more than 6 months was not a reasonable accommodation. In this opinion, Judge Gorsuch demonstrated a troubling view of disability accommodations in the workplace, implying that the plaintiff employee was seeking not to work and should therefore be funneled into the public benefits system rather than the workplace:

Ms. Hwang’s is a…problem other forms of social security aim to address. The Rehabilitation Act seeks to prevent employers from callously denying reasonable accommodations that permit otherwise qualified disabled persons to work—not to turn employers into safety net providers for those who cannot work.

Remarkably, Judge Gorsuch affirmed dismissal of the case prior to fact discovery, thereby precluding the plaintiff from the ability to present evidence. He also failed to engage in the individualized inquiry required in such cases, in conflict with U.S. Supreme Court precedent, guidance from the Equal Employment Opportunity Commission, and four other circuit courts (in addition to a prior conflicting decision within the Tenth Circuit). An amicus brief on behalf of several disability rights advocacy groups requesting a rehearing referred to the decision as “unprecedented.”

Another standout case is Thompson R2-JSchool District v. Luke P. (2008), in which Judge Gorsuch articulated an extraordinarily low standard for educational benefit that is now under review before the U.S. Supreme Court in another case arising from the Tenth Circuit, Endrew F. v. Douglas Cty. Sch. Dist. Re-1. In Luke P., the hearing officer, administrative law judge, and the district court found for the student, noting that the district had failed to provide a free appropriate public education as demonstrated by the student’s inability to generalize the skills he learned at school to settings outside of school. These decisions were based on the notion that this level of minimal progress towards IEP goals was not enough to constitute a meaningful educational benefit under the IDEA. Judge Gorsuch disagreed:

[A] school district is not required to provide every service that would benefit a student if it has found a formula that can reasonably be expected to generate some progress on that student’s IEP goals…Rather, [the IDEA] much more modestly calls for the creation of individualized programs reasonably calculated to enable the student to make some progress towards the goals within that program.

In finding for the school district, Judge Gorsuch rejected the plaintiff’s argument that the purpose of the IDEA, as stated clearly by Congress, was to help students with disabilities achieve more meaningful progress that led to a greater possibility of independent living. Despite legislative history to the contrary, Judge Gorsuch noted that independence was not an outcome-oriented guarantee of the law. In November, along with a large coalition of disability advocates, The Arc submitted an amicus brief before the U.S. Supreme Court challenging this same low standard employed by the Tenth Circuit in the Endrew F. case. In another IDEA case, A.F. v. Espanola Public Schools (2015), where Judge Gorsuch found for the school district, the dissenting judge noted that the outcome “was clearly not the intent of Congress and…harms the interest of the children that IDEA was intended to protect.”

Judge Gorsuch has also demonstrated a narrow view of class actions, a crucial tool for individuals with disabilities to enforce their rights in court. For example, in Shook v. Board of County Commissioners of County of El Pas(2008), Judge Gorsuch affirmed the denial of class certification to a group of plaintiffs alleging that jail conditions for prisoners with psychiatric disabilities violated the Eighth Amendment’s ban against cruel and unusual treatment. In so finding, Judge Gorsuch reasoned that it would be too difficult to craft appropriate systemic relief for the class as a whole given the variety of psychiatric disabilities represented in the class.

These decisions are more than just abstract discussions of legal theories – they have real-life consequences for The Arc’s constituents. In particular, Judge Gorsuch’s effectively pro-school district stance has been devastating for students with disabilities and special education advocates in the Tenth Circuit. Advocates from AdvocacyDenver (a chapter of The Arc), noted that the Luke P. decision was “seismic” for students with disabilities in Colorado, leading school districts to believe that they had a champion in the Tenth Circuit. This dramatically changed their approach to IEP disputes and empowered them to act to the detriment of students with disabilities under the belief that they would almost always prevail in court. Overall, advocates from the chapter noted that the Tenth Circuit offers some of the weakest protections for students with disabilities and their families in the country and that Judge Gorsuch’s decisions on the IDEA have had deeply problematic results for special education advocates and students with disabilities in Colorado.

On the other hand, Judge Gorsuch, like The Arc, is a staunch opponent of physician-assisted suicide. While he has not yet addressed this issue in court, Judge Gorsuch authored a 2006 book, The Future of Assisted Suicide and Euthanasia, in which he notes that: “[a]ll human beings are intrinsically valuable…any line we might draw between human beings for purposes of determining who must live and who may die ultimately seems to devolve into an arbitrary exercise of picking out which particular instrumental capacities one especially likes.” Among other reasons for his opposition, Judge Gorsuch links the practice to the history of societal devaluation of people with disabilities embodied by the eugenics movement, flagging the inherent risk for abuse the system poses for people with disabilities.

Judge Gorsuch’s views on this subject and his recognition of the inherent dignity of people with disabilities reflect an important area of common ground. The question is whether his jurisprudence will ever link this belief in inherent dignity with a robust protection of rights that is so crucial to the ability of people with disabilities to learn, work, and lead dignified lives in the community among their peers. During his tenure on the Tenth Circuit, the answer to this question has largely been no.

More information about Judge Gorsuch’s majority and concurring opinions relating to disability rights can be found here.