Policy & Advocacy Newsline ~ January 21, 2019

New Congress, New Opportunities

The 116th Congress convened on January 3, 2019. The House of Representatives shifted from Republican to Democratic control, and there are over 100 new Members of Congress. We are optimistic that the change in control of the House, which has led to a divided government (as opposed to one party controlling the White House and both chambers of Congress), will present more proactive opportunities to implement NDSC’s policy agenda.

All bills that did not pass during the 115th Congress are finished. Some will be re-introduced and look similar, some will be changed significantly, while others may just be dropped entirely and not re-introduced. Cosponsors will need to be enlisted again, and new members and their staffs need to be educated on the issues salient to our community.

We encourage you to get to know your new Members of Congress and their staffs by setting up appointments in their district offices to discuss policy issues that are important to you and your family. Feel free to reach out to us if you would like some talking points.

Competitive Integrated Employment Definition At-Risk

Employment policy is one of NDSC’s top priorities, and NDSC is working with the Collaboration to Promote Self-Determination (www.cpsd.org) to retain certain key aspects of the Workforce Innovation Opportunity Act (WIOA) law, especially the definition of “competitive integrated employment” (CIE). WIOA defines CIE as work at or above minimum wage, with wages & benefits comparable to, and fully integrated with, co-workers without disabilities. This definition was the result of robust discussions among all stakeholders and has become settled law. Unfortunately, the Department of Education has issued a list containing regulations that it may re-opened, and the regulation defining CIE is on this list. When a regulation is “re-opened”, that means that the Department of Education is considering amending it. The public is required to be given notice and the opportunity to comment on potential changes.

NDSC and our allies have been meeting with the Department of Education and sending them letters urging them not to re-open the CIE regulations and explaining why this action would be harmful. Our position has been supported by two recent federal reports that also recommend not opening the regulations but instead providing technical assistance through sub-regulatory guidance: the October 2018 report from the National Council on Disability entitled “From the New Deal to the Real Deal: Joining Industries of the Future” (HERE) and the Senate Health, Education, Labor and Pension (HELP) Committee’s recent report, “Disability Employment: Outdated Laws Leave People with Disabilities Behind in Today’s Economy, Minority Staff Report” (HERE) making similar recommendations.

NDSC is preparing for the CIE regulations to officially be opened up sometime in the next couple of months, and we will be sending out Action Alerts with all of the information you need to submit comments to the Department of Education to oppose the changes. Please be sure to sign up for our Action Alerts so you get this information HERE.

Medicaid Block Grants May Be Considered by the Administration

Several recent media reports have disclosed that the Center for Medicare & Medicaid Services (CMS) is in the process of developing guidance to allow states to get block grants for Medicaid instead of which would alter the current federal-state partnership structure (HERE). A “block grant” is a fixed amount of money that the federal government would give to each state that would be determined in advance. That amount would presumably be based on some estimate of state Medicaid costs, and would likely radically cut the federal share of Medicaid funding currently provided to the states. This will lead to states being forced to make significant cuts in their Medicaid services, and “non-acute” services like Long Term Services and Supports will likely be the first to be cut.

Over 10 million people with disabilities, including those with Down syndrome, rely upon Medicaid for their health care, employment and access to community life. In addition to covering medical care, state Medicaid programs cover a wide range of services and supports for people with disabilities. Shifting to a block grant model would be devastating to the Medicaid program (see here for explanations on why block grants would have bad consequences for people with disabilities: HERE; see also HERE).

While we are concerned about this potential change, we are not yet in panic mode. We have not yet seen the CMS proposals, and it is very unclear what authority CMS will have to make such a significant change to the Medicaid program without Congressional action. When Congress unsuccessfully tried to cap and cut Medicaid last year, it was met with strong opposition from the disability community. Rest assured that we will continue to keep you posted and will be prepared to mobilize against this action should it come to fruition.

Disability Integration Act Re-Introduced

On January 15, 2019, the Disability Integration Act (DIA) was re-introduced by Senator Schumer (D-NY) in the Senate and Representative Sensenbrenner (R-WI) in the House. The DIA is civil rights legislation to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are often forced into institutions instead of receiving care at home and in the community. We recognize the importance of home and community-based services (HCBS) as an alternative to institutionalization for people with Down syndrome. NDSC has supported this bill in the past and will continue to advocate for its passage in this Congress. For more information about the effort to pass DIA, see HERE.

Want DC-Based Advocacy Training? Attend the Disability Policy Seminar!

NDSC has recently signed on as a promotional partner for the Disability Policy Seminar (DPS). The DPS is a three- day annual federal legislative conference co-sponsored by The Arc, AAIDD, AUCD, NACDD, UCP, and SABE. The purpose of the DPS is to strengthen federal advocacy efforts by having people from around the country come to DC, receive training and updates, and visit their Members of Congress. The DPS helps promotes unity, strengthens movement building, and amplifies the concerns of people with I/DD before Congress. The 2019 Disability Policy Seminar is April 8-10 at the Renaissance Hotel, Washington D.C. Click here to register: HERE

Money Follows the Person Update

NDSC has been advocating for the reauthorization of the Money Follows the Person (MFP) program. MFP is a Medicaid program that has helped over 85,000 people with disabilities and seniors move out of nursing homes or institutions and back into their communities. The program expired and all states have run out of funding. We strongly advocated for reauthorization in the last Congress but we ran out of time. Luckily, the bill was re-introduced very early in the current Congress. We are pleased to report that both the House and Senate have passed the Medicaid Extenders Act of 2019 (H.R. 259), which now heads to President Trump’s desk for signature. This bill gives three months of funding for the MFP program, which states will have until September 31, 2019, to spend. We will immediately start advocating for a longer reauthorization period, but this is a good start.

Advocacy Training Bootcamp

Free to Convention attendees!
NDSC Convention – June 27-30, 2019 in Pittsburgh, PA
YOU WILL BE ABLE TO REGISTER FOR THE ADVOCACY TRAINING BOOT CAMP WHEN NDSC CONVENTION REGISTRATION OPENS IN LATE MARCH 2019

Rescission of School Discipline Guidance

NDSC is very disappointed that in December Secretary DeVos rescinded the joint U.S. Department of Justice and U.S. Department of Education discipline guidance (and other related documents) regarding Title VI of the Civil Rights Act of 1964, which provided important information to schools to prevent discrimination against students of color and students with disabilities. This guidance is supported by decades of research showing disproportionately severe discipline treatment for these populations. Even though it will still violate federal law to discriminate against students of color and students with disabilities, without this guidance we are likely to see even more disparate treatment of students from vulnerable and at-risk populations. The rescission of the guidance was recommended by a report from the Federal Commission on School Safety, which was led by Secretary DeVos. You can read the report and summary HERE. We fully recognize and support the need for enhanced school safety but believe that true safety for all students will not be achieved by rescinding this guidance. You can read the rescinded guidance HERE

IDEA report to Congress

The 40th Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act (IDEA) was recently released. The Report provides data, nationally and at the state level, on:

• Providing a free appropriate public education (FAPE) in the Least Restrictive Environment     (LRE) for children with disabilities under IDEA, Part B and early intervention services to infants and toddlers with disabilities and their families under IDEA, Part C
• Ensuring that the rights of these children with disabilities and their parents are protected
• Assisting states and localities in providing for the education of all children with disabilities
• Assessing the effectiveness of efforts to educate children with disabilities

National data for the educational environment by disability category (from the Fall of 2016) for students ages 6-21 is on page 55 of the Report. State-specific data on the educational environment for students ages 6-21 with an intellectual disability is on page 157-58.  The full report is HERE.

1st Circuit FAPE Amicus Brief

NDSC collaborated on this amicus brief submitted to the 1st Circuit Court in a Massachusetts case that will help interpret the Endrew F. Supreme Court case regarding FAPE. Find it HERE.

Want to See More of our Advocacy in Action?

Sign up to receive our Action Alerts! Receive timely, accurate information from the NDSC Policy & Advocacy Team and to magnify your voice. Signing up is free and takes less than one minute – simply provide your name, email, address and zip code. NDSC will not share your personal information and will use it for advocacy communication purposes only.

“Like” the NDSC Policy & Advocacy Facebook page and follow NDSC Policy & Advocacy on Twitter @policyupdates

Interested in joining our National Down Syndrome Advocacy Coalition (NDAC) program?

Become a member today, learn more HERE and submit a quick application.

If you like what you see, please consider making a donation to help us further our Policy Team goals.
Click here and put “Policy” in the Comments section.  Thank you!