As many of you have heard, Marca Bristo, CEO of Access Living passed this weekend.  We at the Arc re-double our commitment to follow Marca’s leadership and example to keep fighting so that all people with disabilities will be directors of their own lives and full participants in all communities. We stand together to work for justice and equity for all. Thank you Marca.  We send our love and support to our friends and colleagues at Access Living during this hard time.  

Chicago Tribune article 
Chicago Sun Times article 

Federal Action Alerts

Act Now to Protect Food Assistance

Protect Access to Medicaid

Major Recent Events

Medicaid: CMS Proposes Rescinding Access Rule

On July 15, The Centers for Medicare and Medicaid Services (CMS) issued a proposed rule rescinding the Medicaid Access Rule. The Medicaid Access Rule is CMS’s means of enforcing the statutory requirement that states set provider reimbursement rates high enough to allow people to access the services and supports that they need. States are currently required to create an access monitoring review plan (AMRP) and to monitor selected Medicaid services. The proposed rule eliminates that requirement. The Arc believes that the Access Rule should be strengthened, not weakened. Comments are due on September 13. Take action here.

Income Support: The Administration Proposes Cutting Food Assistance for 3.1 Million; Comments Due September 23

On July 24, the Administration issued a notice of proposed rulemaking that would cut current eligibility for Supplemental Nutrition Assistance Program (SNAP). For the past 20 years, states have had flexibility to adjust SNAP eligibility to reflect local and state dynamics and to help low-income people to avoid a SNAP benefit cliff. Unfortunately, this proposal would eliminate that flexibility and cut off SNAP benefits for 3.1 million individuals. This change will also eliminate eligibility for free school meals for the children in those families. SNAP provides food assistances that helps approximately 11 million people with disabilities. The Arc strongly opposes the changes in the proposed rule. Watch The Arc’s video on the importance of SNAP and take action here. Comments are due September 23.

Family Support: RAISE Family Caregiving Advisory Council Holds First Meeting

On August 28 and 29, the RAISE Family Caregiving Council held its first meeting. This Council was established under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2018. Nancy Murray, President of The Arc of Greater Pittsburg at Achieva, and James Cheely, President of The Arc of Barren County, Kentucky were selected to be members of the Family Caregiver Advisory Council. The Council is charged with assisting the Secretary of Health and Human Services in the development of a National Family Caregiving Strategy. Visit the Council’s website and see The Arc’s statement for more information.

Major Events Ahead

Budget & Appropriations: Short Term Funding Bill in the Works While House, Senate Continue Work on FY 2020 Appropriations

House Majority Leader Steny Hoyer (D-MD) announced that the House will consider a continuing resolution the week of September 16 to prevent a government shutdown on September 30, the start of fiscal year (FY) 2020. Meanwhile, the Senate will begin marking up its full FY 2020 appropriations bills this week. The Labor, Health and Human Services, Education, and Related Agencies bill, which funds most disability-related programs, will be marked up in Subcommittee on September 10 and by the full Committee on September 12. The House has already passed ten of its twelve appropriations bills earlier this summer, but with higher funding levels than those agreed to in the recent budget deal. It is unlikely that Congress will come to an agreement on full-year appropriations bills by September 30. The short-term spending bill is expected to run through late November or early December to allow lawmakers enough time to agree on funding levels.

Rights: House to Hold Hearing on “The Administration’s Apparent Revocation of Medical Deferred Action for Critically Ill Children”

On September 11, The House Committee on Oversight and Reform’s Subcommittee on Civil Rights and Civil Liberties will hold a hearing on “The Administration’s Apparent Revocation of Medical Deferred Action for Critically Ill Children.” This policy allowed some immigrants to with serious medical needs and their family members who care for them to stay in the country while receiving life-saving treatment. The Arc is opposed to ending this policy. Visit the Committee website for more information or to access live video on the of the hearing.

Housing: Senate to Hold Hearing on Housing Finance Reform

On September 10, the Senate Committee on Banking, Housing, and Urban Affairs will hold a hearing titled “Housing Finance Reform: Next Steps”. Witnesses will include Treasury Secretary Steven Mnuchin, Housing and Urban Development Secretary Ben Carson, and Federal Housing Agency Director Mark Calabria. People with disabilities and their families already face a national shortage of accessible, affordable housing, particularly the lowest-income people with disabilities, so it’s important to make sure housing finance reform proposals would not create additional barriers or increase costs in a way that worsens the problem. Visit the committee website for more information or to access live video on the day of the hearing.


Medicaid/LTSS: The Arc Releases New Videos on Deinstitutionalization and Community Living

The Arc recently released two new videos relating to deinstitutionalization and community living. The first video discusses the fact that 37 states still have state-run institutions for people with I/DD. The video features self-advocates and siblings discussing the need to close remaining institutions. Additionally, it calls for additional resources to make community living possible. The second video features self-advocates discussing what community living means to them. It calls for additional funding to eliminate waiting lists.