Good News About Electronic Visit Verification (EVV)

The bill to delay EVV implementation passed the Senate.  This would positively impact families and individuals participating in the home based program where thie was going to have to be implemented asap.   “Passed H.R.6042: to delay the reduction in Federal medical assistance percentage for Medicaid personal care services furnished without an electronic visit verification system.”

We will let you know when we anticipate the bill to be signed by the president. Thank you for all your efforts!

SSA Repayee Issues

There was a federal law that was just signed into law in April and starts August 1st that impacts family guardians who are repayees.  There is an outreach and education component to this program the details of which are being worked out.  Eguip for Equality as the Protection and Advocacy for the the area is working with their National Association and the Social Security Administration to ensure a smooth a start as possible.

SSA did receive fairly prompt partial relief from 1984 Jordan v. Schweiker decision requiring all representative payees to submit an annual accounting form which allows the SSA to move forward implementing a key provision of the Strengthening Protections for Social Security Beneficiaries Act.  The order is here; press release by the House Ways & Means Social Security Committee at  SSA is developing policy instructions to instruct staff to not pursue accounting-related actions for exempt payees, and they are working on creating a one-time notice to inform affected payees of the exemption. Presumably they will also be updating their payee manual to reflect this change. So more to follow.

Action Alert

Urge Congress to Pass the EMPOWER Care Act

Webinar – Advocate to Improve ABLE

The Stephen J. Beck, Jr. Achieving a Better Life Experience (ABLE) Act opened doors for many people with I/DD and families by giving them an opportunity to save for the future without endangering their eligibility for public benefits. Today, this progress is in jeopardy. The National Association of State Treasurer projects that 390,000 accounts are needed by 2021 in order to achieve sustainability for ABLE programs. There are currently 17,000.

In order to stabilize ABLE programs, it is essential to increase eligibility. The ABLE Age Adjustment Act will increase the maximum age of onset from 26 to 46, opening programs to six million additional potential beneficiaries. Among these potential beneficiaries are people with I/DD who would only be eligible because of a secondary disability.

Join us Wednesday, July 18 at 2:00 p.m. EDT for a webinar about this important legislation.

Register here!

Major Recent Events

Family Support/Employment/Social Security – Senate Committee Holds Hearing on Paid Family Leave

On July 11, the Senate Finance Committee’s Subcommittee on Social Security, Pensions, and Family Policy held a hearing on “Examining the Importance of Paid Family Leave for American Working Families.” Witnesses were Senator Joni Ernst (R-IA); Senator Kirsten Gillibrand (D-NY); Andrew Biggs, Ph.D., Resident Scholar, American Enterprise Institute; Vicki Shabo, Vice President for Workplace Policies and Strategies, National Partnership for Women & Families; and Carolyn O’Boyle, Managing Director, Deloitte Services, LLP. Visit the Committee web site for more information including opening statements, testimony, and archived video of the hearing.

(From Family Voices) 
House Appropriations Committee Approved FY 2019 Labor-HHS-Education Appropriations Bill
Last week, the full House Appropriations Committee approved a bill to provide FY 2019 funding for the Departments of Labor, Health and Human Services, and Education. In total, the draft bill includes $177.1 billion in discretionary funding, essentially the same as the 2018 enacted level. It provides a total of $38.3 billion for NIH, an increase of $1.25 billion above the fiscal year 2018 enacted level and $4.1 billion above the President’s budget request. Among the various NIH programs that received an increase is the Gabriella Miller “Kids First” pediatric cancer research initiative. Also of note: the bill provides $655 million for the Maternal and Child Health Block Grant, an increase of $3 million over the fiscal year 2018 enacted level, and $12.3 billion for IDEA special education grants to states, an increase of $50 million over the fiscal year 2018 enacted level, which will maintain the federal share of special education funding to states.The bill does not include additional funding to implement Affordable Care Act programs, prohibits funds for the “Navigators” program, and prohibits the collection of user fees from the Health Insurance Exchanges.The bill also includes the longstanding prohibition against using federal funds to advocate or promote gun control.

During the markup, Members from both parties offered amendments related to the separation of immigrant families. Adopted were amendments: to require HHS to submit a plan to reunify immigrant children with their parents; to clarify standards for family detention; to permit detention of families as a unit; to supportefforts to house immigrant children who are siblings together; to prohibit the administration of medication to unaccompanied alien children unless certain conditions deem such medication medically necessary; to require an Inspector General report on family separation and reunification politics; to reaffirm HHS statutory responsibilities for unaccompanied alien children; to direct $10 million to fund mental health services for children separated from their families at the border; to prohibit funding for HHS to use questions of religion in the process of family reunification; to require a report on pre-literate unaccompanied alien children; to protect personal and genetic information of children and adults if used in the process of family reunification; and to require a report on the mental health of separated children.

See the bill summary (6/14/18), report, and text (6/13/18, without amendments).



Tax Policy – Oklahoma Opens Qualified ABLE Program

Oklahoma recently opened a new ABLE program, bringing the total number of jurisdictions with ABLE programs to 37. The program is currently only open to Oklahoma residents. It has five investment options. Accounts have a $3.50 monthly maintenance fee and asset-based fees ranging from 0.19% to 0.33% for investment options. The minimum initial deposit is $50. More information about state implementation of the ABLE Act can be found here.


Survey on Caretakers

Research Survey for Caretakers of Women with Intellectual and Developmental Disabilities
A researcher at Brandeis University is conducting a study on sexual and reproductive health care for women with intellectual and developmental disabilities. She is seeking family caregivers of such women to complete an online survey. The goal of the survey is to understand the perspectives and experiences of family caregivers about sexual and reproductive health care for women with intellectual and developmental disabilities. The survey is available here.


Meg Cooch Signature
Meg Cooch
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)