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Major Recent Events

Budget/Health Care – Senate Advances Repeal of Health Care Law

On January 4, the Senate approved, with a nearly party line vote of 51 to 48, a procedural motion to move ahead with a fiscal year 2017 budget resolution introduced the day before that is intended to repeal 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 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:

Each of these committees is charged with developing legislation to achieve at least $1 billion in deficit reduction over 10 years (fiscal years 2017 through 2026) to submit to their proposals 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 will cut federal spending such as block granting the Medicaid program.

The Senate began to debate the budget resolution and is expected to continue working on amendments this week. Congressional leaders have stated their intent to have the budget resolution adopted by both chambers by Jan. 20, when Donald Trump will be sworn in as president.
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.

Major Events Ahead

Budget/Health Care – Repeal of Health Care Law May Advance This week

The Senate is expected to vote on Wednesday, January 11 on a budget resolution that would begin the process of repealing the Affordable Care Act (ACA). See article above for more information and take action!

The House may also begin a series of votes this week on a reconciliation bill to repeal the ACA, starting in the Rules Committee. The House bill is expected to include language defunding Planned Parenthood which could result in loss of support in the Senate.

Rights – Senate to Hold Confirmation Hearing for Attorney General Nominee

On January 10, the Senate Judiciary Committee will hold a hearing on the nomination of Senator Jeff Sessions (R-AL) to be the Attorney General. The Attorney General is a cabinet level position in charge of the Department of Justice, which is responsible for enforcing federal civil rights laws, including the Americans with Disabilities Act. Visit the Committee web site for more information or to access live video the day of the hearing.

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

On January 11, the Senate Health, Education, Labor, and Pensions Committee will hold a hearing on the nomination of Betsy DeVos to be the Secretary of Education. 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.

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

On January 11, the Senate Commerce, Science, and Technology Committee will a hearing on the nomination of Elaine Chao to be the Secretary of the Department of Transportation. The Department’s mission is to “Serve the United States by ensuring a fast, safe, efficient, accessible and convenient transportation system that meets our vital national interests and enhances the quality of life of the American people, today and into the future.” Visit the Committee web site for more information or to access live video the day of the hearing.

Housing – Senate to Hold Confirmation Hearing for Housing Secretary-Designate

On January 12, the Senate Banking, Housing, and Urban Affairs Committee will hold a hearing on the nomination of Dr. Ben Carson to be Secretary of the U.S. Department of Housing and Urban Development (HUD). HUD is the cabinet level department that oversees federal housing programs and enforces housing laws such as the Fair Housing Act. Visit the Committee web site for more information or to access live video the day of the hearing.


Employment/Rights – Final Affirmative Action Rule for People with Disabilities Issued

The Equal Employment Opportunity Commission (EEOC) issued its final rule to amend the regulations that require federal agencies to engage in affirmative action for individuals with disabilities. These changes clarify the obligations that the Rehabilitation Act of 1973 imposes on federal agencies as employers that are over and above the obligation to not discriminate on the basis of disability. The regulation does not apply to the private sector or to state or local governments. This final rule will be effective on March 6, 2017.

Education/Rights – Education Department Releases Guidance on Civil Rights of Students with Disabilities

On December 28, 2016, the U.S. Department of Education released three new sets of guidance packages to assist the public in understanding how the Department interprets and enforces federal civil rights laws protecting the rights of students with disabilities:
Restraint and seclusion: a Dear Colleague letter and a fact sheet
Public charter schools: Dear Colleague Letter, a Know Your Rights document, an FAQ on rights under Section 504, and an FAQ on rights under IDEA

Section 504 of the Rehabilitation Act: a Parent and Educator Resource Guide

Tax – Alaska, Rhode Island, and Virginia Open ABLE Programs

Alaska, Rhode Island, and Virginia have recently launched Qualified ABLE Programs, bringing the total number of states with ABLE Programs to eight. All three programs are open to eligible individuals nationwide. The Alaska ABLE Plan and “RI’s ABLE” plan are both part of the National ABLE Alliance, which offers six different investment options. The investment options have asset-based fees ranging from 0.34% to 0.38%. Additionally, there is an annual account maintenance fee of $40 and an annual paper fee of $15 if individuals choose to receive statement by mail. Virginia’s ABLEnow program offers four investment options. Investment options have asset-based fees ranging from 0.37% to 0.40%. There is also a $3.25 monthly account service fee. Additional fees can be found here.

Family Support/Health Care – New Study Discusses Costs of Family-Provided Health Care for Children with Special Health Care Needs

A study published in the journal Pediatrics examines the costs of family caregiving for children with special health care needs (CSHCN). There are about 5.6 million CSHCN in the U.S. who receive a total of 1.5 billion hours of uncompensated family care. Replacement with home health would cost approximately $35.7 billion, an average of $6,400 per child. The cost in forgone earnings for caregivers was about $17.6 billion or $3,200 per child.

Prevention – Zika Study Reveals Significant Risk for Microcephaly and Other Brain Injuries

A study published in the Journal of the American Medical Association on December 13, 2016 provided insight into the degree of harm to babies from exposure to the Zika virus in pregnancy. In the study, the Centers for Disease Control and Prevention (CDC) and state health department scientists report:

  • 6% of babies from pregnancies with Zika virus infection have one or more birth defects; 11% if the mother was infected during the first trimester of the pregnancy.
  • The proportion of pregnancies with birth defects was similar for pregnant women who did or who did not have symptoms, about 6% in each group.
  • Most of the affected babies in the study had the well-recognized microcephaly, but some had other structural brain differences.
Health – HHS Issues Guidance of Accessibility of Health Electronic and Information Technology

The U.S. Department of Health and Human Services (HHS) Office of Civil Rights issued guidance clarifying obligations of providers and insurers under Title II of the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act as they relate to Electronic and Information Technology. Covered entities must ensure that the use of electronic technology does not result in people with disabilities being denied equal access. The document specifically addresses websites, medical kiosks, and electronic health records.

Miscellaneous – 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.

Miscellaneous News

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 an I/DD to participate. Stay tuned this upcoming month for its release.


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)