Advocacy

Policy & Advocacy Newsline September 23, 2019

Autism CARES Act Passes Senate and Heads to White House!

Great news! On September 19, 2019, the Autism CARES Act of 2019 (H.R. 1058) passed the Senate unanimously and now heads to the President’s desk for signature. Championed by Rep. Chris Smith (R-NJ) and Rep. Mike Doyle (D-PA) in the House and Senators Mike Enzi (R-WY) and Robert Menendez (D-NJ), the bill provides $1.8 billion over five years and will authorize autism-related programs at the National Institutes of Health, the Centers for Disease Control and the Health Resources and Services Administration.

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Inclusion Resource: Taking the Alternate Assessment Does Not Mean an Education in a Separate Setting

If you have been told, or have concerns, that your child cannot be educated in the general education classroom because he or she takes an alternate assessment a brief published by the TIES Center, which is co-authored by Ricki Sabia, NDSC Senior Education Policy Advisor and TIES Center parent liaison, and Dr. Martha Thurlow, Director of the National Center on Educational Outcomes (NCEO) and Ties Center Advisor, may be a useful resource to you.  The brief can be downloaded by clicking on the link on the bottom right side of the TIES Center home page https://tiescenter.org/.

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Policy & Advocacy Newsline ~ August 22, 2019

Autism CARES Act: Advocacy Needed Now for Reauthorization!

The Autism Collaboration, Accountability, Research, Education and Support Act (also known as the Autism CARES Act) will sunset (expire) on September 30, 2019, if it is not renewed (reauthorized) by Congress by then. The current Autism CARES Act (S. 427/H.R. 1058) provides $260 million annually to autism research, surveillance, and education programs at the National Institutes of Health (NIH), Centers for Disease Control and Prevention (CDC), and Health Resources and Services Administration (HRSA). These programs benefit all people with developmental disabilities, including all people with Down syndrome and especially the approximately 18% of people with Down syndrome who have a co-occurrence of autism.

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Policy & Advocacy Newsline ~ July 22, 2019

NDSC is Working Hard to Protect LRE (Least Restrictive Environment)

Last week, NDSC received word that the US Department of Education (ED) was planning to release guidance in the immediate future that would likely make it more difficult than it already is for children with disabilities to be educated in the least restrictive environment (LRE) under the Individuals with Disabilities Education Act (IDEA). Immediately, the NDSC Policy Team and members of the NDSC Policy Council began to take action to protect the legal presumption in IDEA that all children with disabilities will be educated in the general education classroom; except in the rare circumstance that the child cannot get a satisfactory education in that environment even with the provision of supplementary aids and services.

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Policy & Advocacy Newsline ~ June 20, 2019

Money Follows the Person (MFP) Program Reauthorization Passes House; Calls to Senate Needed Now!

On June 18, the House passed a bill that included 4.5 years of funding for the Money Follows the Person (MFP) program. This is great news, but it is time for the Senate to act! Please call your Senators and urge them to pass the EMPOWER Care Act (S. 548) to reauthorize MFP. You can use our Action Alert.

The Money Follows the Person (MFP) program is a Medicaid program that has helped more than 75,000 people with disabilities and seniors move from nursing homes and other institutions into the community. First authorized in the Deficit Reduction Act of 2005 with strong bipartisan support, the MFP Demonstration program was designed to assist states with (1) supporting Medicaid enrollees who want to transition from institutional settings to community-based settings; and (2) developing infrastructure to promote and enhance access to Home and Community Based Services (HCBS). HCBS provides critical supports to people with disabilities to enhance their ability to be included and integrated into their communities instead of receiving care in restrictive, institutional settings. Each state can decide how to use the MFP funds, which they have used to expand or enhance HCBS programs, reduce waiting lists and fund housing supports.

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Action Alert – Equal Pay for People with Disabilities

ACTION ALERT:
Comment Today to Support Equal Pay for People with Disabilities!

This week the Department of Labor announced its new website, “the Section 14(c) National Online Dialogue.” The purpose of the website is to collect comments from the public about the impact of paying subminimum wages to people with disabilities under section 14(c) of the Fair Labor Standards Act. Employers with 14(c) certificates can legally pay people with disabilities less than the federal minimum wage, often times pennies on the dollar. Section 14(c) certificates are typically used in “sheltered workshops,” where people with disabilities are segregated from the broader community. The vast majority of disability advocates view Section 14(c) (created in 1938) as outdated, discriminatory, and reinforcing a life of poverty, segregation, and dependency on public support for people with disabilities. It is critical that you make your voice heard!

Input from people with disabilities, families, employment providers and employers is important. Share your perspective online here. COMMENT DEADLINE HAS BEEN EXTENDED TO FRIDAY JUNE 21,

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Policy & Advocacy Newsline ~ May 21, 2019

Transformation to Competitive Employment Act

Great news – the Transformation to Competitive Employment Act (H.R. 873/S.260) was featured at a hearing entitled “Eliminating Barriers to Employment: Opening Doors to Opportunity” in the House of Representatives on Tuesday, May 21 before the full Education & Labor Committee. This is a very positive step towards promoting awareness of this bill and generating support for it, but we need YOUR help to get more cosponsors onto this bill so that it can continue to advance! Please contact your Members of Congress through this NDSC Action Alert and let’s build support for this bill.

Introduced in the Senate by Senators Bob Casey (D-PA) and Chris Van Hollen (D-MD) and in the House by Chairman Bobby Scott (D-VA) and Representative Cathy McMorris Rodgers (R-WA), this bipartisan legislation will address barriers to employment and expand opportunities for competitive integrated employment for people with disabilities while phasing out subminimum wage certificates under Section 14(c) of the Fair Labor Standards Act over a six-year period. In addition, for those who choose not to work, work part-time, or for whom their disabilities make it too difficult to maintain work in a competitive integrated setting, this bill includes individualized wraparound services that provide them with opportunities for meaningful training and social activities in the community.

You can find a two-pager about this bill and additional resources on the Collaboration to Promote Self-Determination website. For information about Competitive Integrated Employment, please see this new website developed with our partners in the newly formed Coalition to Advance Competitive Integrated Employment. Please #WorkWithUs and build more opportunities for competitive integrated employment!

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My Advocacy Journey…and My Mission to Help You on Yours

Heather Sachs, NDSC Policy & Advocacy Director

Thirteen years ago, my husband and I were given the news that so many of you have also heard – your baby has Down syndrome. Ours was a delivery room diagnosis (and unfortunately not delivered in a sensitive way), and we were left in complete shock and confusion. We were expecting a healthy baby girl and didn’t even really know what Down syndrome was, and our lives were suddenly placed on a completely unanticipated and unclear path.

Heather and daugther with DS

With the support of national organizations like NDSC and our local Down syndrome group, we began to adjust to our new reality. We plunged into the world of heart surgery, early intervention, private therapies and we started learning about the potential personal and systemic challenges that our daughter could face.

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Policy & Advocacy Newsline ~ April 23, 2019

Transformation to Competitive Employment Act

NDSC continues to advocate for the passage of the Transformation to Competitive Employment Act (H.R. 873/S.260) and we need YOUR help! Introduced in the Senate by Senators Bob Casey (D-PA) and Chris Van Hollen (D-MD) and in the House by Chairman Bobby Scott (D-VA) and Representative Cathy McMorris Rodgers (R-WA), this bipartisan legislation will address barriers to employment and expand opportunities for competitive integrated employment for people with disabilities while phasing out subminimum wage certificates under Section 14(c) of the Fair Labor Standards Act over a six-year period. View a two-pager about this bill on the Collaboration to Promote Self-Determination website.

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Advocacy Training Boot Camp – Jawanda and Rachel Mast

My name is Jawanda Mast. Since my daughter Rachel was born with Down syndrome almost 20 years ago, I have been involved in advocating on behalf of individuals with Down syndrome and other disabilities and their families. I have had some remarkable opportunities to tell our story and have seen our story impact change. My daughter Rachel is 19 years old, and in her first semester of college. She is in the Bear POWER program at Missouri State University. She has been doing advocacy since she was a toddler. Recently, I shared with her that we would be a part of the National Down Syndrome Congress Advocacy Training Boot Camp this year. The discussion that followed was kind of funny and also on point.

Jawanda: Rachel, in June we are going to the National Down Syndrome Congress again.
Rachel: Yah. I am so excited to go back to the Youth and Adults conference. I will see my friends and dance. It is so much fun.
Jawanda: We are also attending the Advocacy Training Boot Camp. I am helping coordinate. Do you want to help?
Rachel: Yes! I will wear my pink cowboy boots?
Jawanda: Well, you can wear your pink cowboy boots but why?

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