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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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.
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.

The MFP program has been widely adopted – with 47 states participating since its inception – and has helped states to make significant progress on “balancing” their long-term services and supports systems to improve access for HCBS. The success of the MFP program has been widely recognized and documented, both in terms of effectively moving individuals from institutional to community-based care settings, reducing waiting lists for HCBS services, and savings states money (See Empower Care Act for more details).

Congress had passed stop gap funding for the MFP program in January 2019, but those funds will run out in September.

How to Help

You can help support the passage of the EMPOWER Care Act by calling the main Capitol line at: (202) 224-3121 (voice) or (202) 224-3091 (TTY) and click HERE to send an email to your Senators. They must hear that their constituents strongly support the Money Follows the Person Program and need them to vote YES on the EMPOWER Care Act to #FundMFP!

Thank you for your advocacy efforts!
The NDSC Policy & Advocacy Team


• I am a resident of [Town, State] and your constituent. [I/my child/sibling/friend/co-worker, etc] is a person with a disability.
• I am calling to express my concern about the expiration of the Money Follows the Person (MFP) Medicaid program, and I am asking you to pass the EMPOWER Care Act and reauthorize Money Follows the Person through 2022
• MFP has enabled over 75,000 seniors and people with disabilities living in institutions to transition back to their communities.
• MFP is fiscally responsible – it has improved the quality of life for thousands of individuals while saving states money.
• The MFP program expired over a year ago, and states are running out of money for these services and already having to scale back. Congress had passed stop-gap funding in January 2019, but that funding will run out by September 2019. Without new funding, states will have to completely eliminate this program.
• Please help keep people with disabilities and the elderly in their homes and in their communities and reauthorize the Money Follows the Person program!

We encourage you to stay engaged in our advocacy efforts by:

(1) Registering for NDSC Action Alerts- click “Quick Sign Up
(2) Subscribing to the NDSC Policy & Advocacy Newsline
(3) Joining our national grassroots advocacy program, the National Down Syndrome Advocacy Coalition
(4) “Liking” NDSC Policy & Advocacy on social media Facebook and Twitter

NDSC E-News ~ June 2019

NDSC’s Mission Moment

with Executive Director David Tolleson 


It’s a busy time at the NDSC Center as we put the final touches on this year’s NDSC Annual Convention!  We’re all very excited to see you – old friends and new – when the world’s Down syndrome community comes together in Pittsburgh.  If this is your first time attending an NDSC Convention, I strongly encourage you to attend the First Timer Orientation session Thursday night – it will help you get the most out of your conference experience.  No matter how many times you’ve joined us, it will help to get familiar with the Convention App well before you arrive.  You’ll find instructions on how to download this handy tool below.

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Convention Insider ~ June 3, 2019


Tuesday, June 4th is the last day to pre-register for the 2019 NDSC Convention. Registration will re-open onsite at the David L. Lawrence Convention Center in Pittsburgh Thursday, June 27th at 4:00 PM. Register now and skip the lines on-site. If you have already registered, please review your email confirmation to ensure you have a conference listed for each person in your family attending and have registered or purchased all optional add-ons, such as the Evening of Champions tickets, t-shirts, flash drives, etc. Changes or additions to existing registrations can be done by calling the NDSC Center at 770-604-9500 but must be done by 5:00 PM, June 4th.

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Action Alert – Equal Pay for People with Disabilities

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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Convention Insider ~ May 15, 2019

Best Value Prices End This Friday, May 17th

Are you planning to attend NDSC’s giant family reunion in Pittsburgh, June 27 – 30?

Register now and take advantage of best value prices before they end this Friday, May 17th.

This is also the last day to register for the Youth & Adults and Brothers & Sisters Conferences.

Best Value Pricing w right border

There are a few remaining spots in Kids’ Camp Friday, June 28th! If you were hoping to attend a pre-conference session this is a great chance to spend 4 hours diving deep into a topic while we provide a safe, structured, and fun environment for your child. Kids’ Camp is available for children with Down syndrome – ages six months to 14 years old, and their siblings – ages six months to rising 3rd graders. (Rising 4th graders and older may register for the Brothers & Sisters Conference.)

For a complete list of convention fees and pricing deadlines visit our website.

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