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Protect the Lifeline – Health Care is Under Attack

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Major Recent Events

Budget/Health Care – House Approves Bill to Advance Repeal of Health Care Law

On January 13, the House passed the fiscal year 2017 budget resolution, by a vote of 227 to 198, that was passed by the Senate the day before. The budget resolution begins the process of repealing the Affordable Care Act (ACA) and may result in other harmful provisions for people with disabilities. The measure provides “reconciliation instructions” to four authorizing committees so that ACA repeal legislation can move through a fast-track process and can advance with only a simple majority in the Senate instead of the usual 60 votes required to avoid a filibuster:

Each of these committees is charged with developing legislation to achieve at least $1 billion in deficit reduction over 10 years and submitting it to their respective budget committees by January 27, 2017. These instructions are intended to produce repeal of parts of the ACA that impact mandatory spending or revenue such as the individual mandate to have health insurance, federal subsidies to purchase health insurance, funding for Medicaid expansion, and various taxes that help fund the ACA. However, since the instructions are broad, the resulting legislation could include other provisions that could be threat to Medicaid or other federal.

The Arc strongly opposes repeal of the ACA and structural changes or cuts in funding to Medicaid. See our action alert and our Lifeline campaign.

Education – Supreme Court Hears IDEA Case

On January 11, the U.S. Supreme Court heard oral arguments in the case of a Colorado student with autism, Endrew F. v. Douglas County School District. Endrew’s parents withdrew their son (known as Drew) from public school and enrolled him in a private school after his individualized education program (IEP) proposed goals for fifth grade that closely resembled goals for earlier years. This case addressed the following question: what level of educational benefit must school districts confer on children with disabilities to provide them with the free appropriate public education guaranteed by the Individuals with Disabilities Education Act? The Arc joined other disability advocates in filing an amicus brief in November that argues that Congress’s move to standards based education, combined with the specific language of the amendments to the IDEA, make the Tenth Circuit’s merely-more-than-de-minimis standard untenable. The brief argued that these amendments make clear that a school district’s educational interventions must provide a child with a disability an equal opportunity to meet the standards the district applies to all children and that any deviation from that universal standard must be tied to the unique needs of the child. For more information about the oral argument, see the argument analysis from SCOTUSblog. A decision is expected this summer.

Housing/Prevention – HUD Releases Final Rule on Children’s Lead Levels in Blood

On January 16, the U.S. Department of Housing and Urban Development (HUD) published a new rule to ensure a quicker response when young children living in federally owned or assisted housing experience elevated levels of lead in their blood. The rule lowers the Department’s threshold of lead considered safe in a child’s blood to match the more protective guidance of the Centers for Disease Control and Prevention, from 20 micrograms of lead per deciliter of blood (µg/dL) to 5. It also establishes more comprehensive testing and evaluation procedures for the housing where such children reside. Childhood lead poisoning has long been documented as causing reduced intelligence, low attention span, and reading and learning disabilities, in additional to behavioral challenges. Read HUD’s new rule here.

Tax Policy – Kentucky Opens ABLE Program

In December, Kentucky opened its Qualified ABLE Program. The Program, called STABLE Kentucky, is currently only open to Kentucky residents. It has five investment options. An account requires an initial $50 deposit and costs $5 per month. Additionally, beneficiaries will be charged asset-based fees between 0.19% and 0.34% depending on their investment choices.

Major Upcoming Events

Education – Senate to Hold Confirmation Hearing for Secretary of Education Nominee

The January 11 hearing on the nomination of Betsy DeVos as Secretary of Education was postponed and will now be held on January 17. The Department of Education is responsible for implementation of federal education laws including Every Student Succeeds Act, the Higher Education Act, and the Individuals with Disabilities Education Act. Visit the Committee web site for more information or to access live video the day of the hearing.

Health – Senate to Hold Confirmation Hearing for Secretary of HHS Nominee

On January 18, the Senate Health, Education, Labor, and Pensions Committee will hold a hearing on the nomination of Rep. Tom Price (R-GA) to be the Secretary of Health and Human Services (HHS). HHS is the cabinet level department that administers most federal health and social service programs, including Medicare, Medicaid, Affordable Care Act programs, Developmental Disabilities Act programs, Head Start, and Temporary Assistance for Needy Families. Additionally, it oversees the Centers for Disease Control and Prevention, the Food and Drug Administration, and the National Institutes of Health. Visit the Committee web site for more information or to access live video the day of the hearing.


Disability Policy Seminar

– Registration for the 2017 Seminar is open
The 2017 Disability Policy Seminar will be held on March 20-22 in Washington, D.C. This event is the premier opportunity to cultivate champions on Capitol Hill and advance the grassroots movement for people with intellectual and developmental disabilities (I/DD). For 40 years, this unique platform has offered the opportunity to come together with passionate advocates, self-advocates, experts, and professionals in the field to learn about key issues.

The first 100 days of any new Administration and Congress are key to setting the agenda-and this year, more than ever, we need you in Washington, DC to advocate for the lifeline programs. Access to health care and community living supports, bedrock civil rights protections, and the lifeline Medicaid program are at risk. The Disability Policy Seminar is your chance to make an impact! Register here.

Education – U.S Department of Education Releases ESSA Guidance

On January 10, 2017, the U.S. Department of Education released a series of resources to support States in their transition to the Every Student Succeeds Act (ESSA). The guidance documents are intended to provide additional clarity on the role of States, districts, and schools under the ESSA to ensure that all students receive a high-quality education and that they graduate from high school prepared for success in college and careers.

  • The Consolidated State Plan guidance is intended to help States plan to meet requirements regarding improved student academic achievement and increased quality of instruction.
  • The State and Local Report Cards guidance is intended to help implement requirements regarding increasing transparency and informing students, parents, and educators on the success of students and schools.
  • The High School Graduation Rate guidance is intended to help calculate a four-year adjusted cohort graduation rate, disaggregated by subgroups (including students with disabilities).

Health/Technology – Access Board Issues Final Rule on Accessible Medical Diagnostic Equipment

On January 9, the Architectural and Transportation Barriers Compliance Board (Access Board) issued a final rule on Standards for Accessible Medical Diagnostic Equipment (MDE). The accessibility standards provide minimum technical criteria for MDE, including but not limited to, examination tables, examination chairs, weight scales, and mammography equipment. The MDE Standards do not impose any mandatory requirements on health care providers or medical device manufacturers. However, other agencies may issue regulations or adopt policies that require health care providers to acquire accessible MDE that complies with these Standards.

Technology – Access Board Issues Final Rule on Information and Communication Technology

The Architectural and Transportation Barriers Compliance Board (Access Board or Board) released a final rule on January 9 that updates accessibility requirements for information and communication technology (ICT) in the federal sector covered by Section 508 of the Rehabilitation Act. The rule also refreshes guidelines for telecommunications equipment subject to Section 255 of the Communications Act. The rule was developed in response to market trends and innovations in technology. The updated requirements specify the technologies covered and provide requirements for hardware, software, and support documentation and services. Access is addressed for all types of disabilities, including those pertaining to vision, hearing, color perception, speech, cognition, manual dexterity, and reach. The rule restructures provisions so that they are categorized by functionality instead of by product type due to the increasingly multi-functional capabilities of ICT products. The rule will take effect in one year. The Board will conduct a webinar on the rule on February 2.

Paul Marchand Internship Application for Summer 2017 Session Due Feb. 15

The Paul Marchand Internship Fund will provide $3,000 per semester or summer session to assist interns interested in pursuing careers in public policy advocacy for people with intellectual and/or developmental disabilities (I/DD). For 38 years, Paul Marchand was a dedicated disability policy advocate and recognized leader working on behalf of people with I/DD and the larger disability community. Upon his retirement in 2011, The Arc, with substantial contributions from United Cerebral Palsy, other organizations, and individuals with whom Paul worked during his decades in Washington, established an internship to honor Paul and to continue to cultivate disability policy advocates. See more information here.

The Arc Seeking Caregivers for FINDS Survey

With the new year comes a new Family and Individual Needs for Disability Supports (FINDS) Survey. We need your input! The Research and Training Center on Community Living at the University of Minnesota, in collaboration with The Arc, is seeking caregivers to share their perceptions on a range of life-span issues impacting individuals with I/DD. We are inviting people aged 18 years or older who provide frequent primary support to a person with I/DD to participate. Take the survey here.



The previous issue of Capitol Insider stated that there were eight states with open ABLE programs. The correct number is ten. The Arc regrets this error.

Tony Paulauski's signature

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
708-828-0188 (CELL)