Policy & Advocacy Newsline ~ November 26, 2018

Midterm Election Results Lead to Divided Congress

As a result of the midterm elections, the House of Representatives will shift from Republican to Democratic control in the 116th Congress, which will begin in January 2019. The Senate will remain under Republican control with an increased Republican majority.  The party that has the majority of members in the House or Senate has substantial power to set the agenda, chair committees, and decide what bills will be considered for hearings and markups. The majority also has more members on each of the committees. The House has significant authority over appropriations and oversight of existing laws and regulations as well as oversight over the executive branch in general.

It is unknown exactly how this divided Congress will impact policy, but we believe that Congress will now be less likely to prevail in efforts to repeal the Affordable Care Act or to cut or significantly alter Medicaid. Continued ideological differences and partisanship could possibly lead to ongoing gridlock, but we are hopeful instead that the new balance of power will lead to more bipartisan action. For an analysis of changes we can expect in House and Senate committee leadership and their impact on policy, see this document prepared by our colleagues at The Autism Society, HERE.

Action Alerts: Let’s Get These Bills Over the Finish Line!

The 115th Congress ends in December, and NDSC is working with other disability groups to get two particular bills across the finish line in what is known as the “lame duck” session. These bills are unlikely to pass on their own, but may get attached to a bigger piece of legislation if we show our legislators that they are important to our community! Please take a moment to call and/or send emails to your Senators and Representatives about the following bills and ask them to pass them in this Congress:

  1. EMPOWER Care Act (S. 2227/H.R. 5306) to reauthorize the Money Follows the Person (MFP) Program. The MFP program provides grants to states to expand access to Home and Community-based Services (HCBS) and helps some people with intellectual and developmental disabilities transition out institutional settings into the community-based care settings of their choice. Click HERE for the Action Alert on the EMPOWER Care Act and MFP.
  2. ABLE Age Adjustment Act (S. 817/H.R. 1874) to increase the eligibility threshold for ABLE accounts for onset of disability from before age 26 to before age 46. This increase would result in six million additional individuals with disabilities becoming eligible to open an ABLE account, which is an important savings tool to empower individuals with disabilities to achieve and maintain health, independence and quality of life. This age increase would also enhance the sustainability of some ABLE programs nationwide. Click HERE for the Action Alert on the ABLE Age Adjustment Bill.


Keeping All Students Safe Act Re-Introduced

On November 14, 2018 Representatives Donald Beyer (D-VA) and Robert Scott (D-VA) and Senators Chris Murphy (D-CT) and Patty Murray (D-WA) introduced the Keeping All Students Safe Act (HR 7124), a critical piece of legislation that would ensure a standard of protection against abusive practices in schools. The bill would prohibit physical restraint that is life-threatening or restricts breathing, mechanical or chemical restraint and seclusion in schools that receive federal funding. Similar versions of this bill have been introduced in the past few Congresses. NDSC has been a longtime member of the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), the coalition working closely with Members of Congress to push this bill forward. APRAIS was established in 2004 by leading education, research and advocacy organizations with a common goal: to eliminate the use of dangerous and dehumanizing practices as a means of managing challenging behavior. NDSC supports this bill and will continue to provide updates as this bill gets re-introduced in the 116th Congress. For more information on the effort to get this bill passed, see HERE.

Autonomous Vehicles Coming Down the Track

NDSC has been invited to join a stakeholder coalition to advise the Department of Transportation and Department of Labor on the development of self-driving cars (known as “autonomous vehicles”). It is important that these vehicles be universally designed to accommodate people with all types of disabilities, including intellectual disabilities. Autonomous vehicles have tremendous potential to increase employment opportunities for people with Down syndrome as they will provide reliable transportation and independence, but they need to be designed to be safe and accessible. To learn more, see the Department of Transportation’s recent report on “Preparing for the Future of Transportation, Automated Vehicles 3.0”. Our colleagues at the National Council on Disability and the Disability Rights & Education Fund (DREDF) have put together a report that examines the current state of the technology, current approaches to regulation, and potential barriers to full use by people with disabilities. See DREDF’s report HERE.

Public Charge Rule Raises Concerns

NDSC has concerns about the revised “public charge” rule announced by the U.S. Department of Homeland Security on October 10, 2018 and believes that the expanded scope of the public charge rule is discriminatory to people with Down syndrome in that admission to the United States – including travel for a medical procedure or to the NDSC Convention – could be denied solely on the basis of having a child with Down syndrome or another disability. See NDSC’s statement here: https://www.ndsccenter.org/wp-content/uploads/NDSC-Statement-on-Public-Charge-Rule.pdf.  NDSC will be submitting comments to the Department of Homeland Security to raise these concerns prior to the December 10 deadline. We encourage individuals to submit their own comments by using this template developed by our colleagues at The Arc, HERE. For more information about the public charge issue, see HERE.

NDSC Position Statements Available

The NDSC Policy & Advocacy Team has been working with the NDSC Public Policy Advisory Council to develop official policy position statements on certain topics of interest. These policy position statements are used to uphold NDSC’s mission, advance our policy goals, and serve to inform our constituency, stakeholders and the general public about NDSC’s organizational views on key issues. Recently approved and adopted by the NDSC Board of Directors, click here to read NDSC’s new policy position statements on Employment, Inclusive Educationand Housing/Community Living HERE. These statements are also available in printable PDF versions on our website.

Advisory Council Member Receives Distinguished Award

Madeleine C. Will, a member of the NDSC Public Policy Advisory Council and the founder and current Interim President of the Collaboration to Promote Self-Determination (which NDSC is one of the leading members), received the distinguished 2018 “Special Recognition Award” from the Association of University Centers (AUCD) on November 13 at the AUCD Convention Awards Celebration. This award is presented annually to an individual who has had a significant impact on the quality of life for people with disabilities. Madeleine was recognized for the body of her work that has had an enormously positive impact on people with disabilities, their families and the networks that serve them.

Extensions of State Waivers of 1% Cap on Alternate Assessments

States are starting to ask for extensions of ESSA waivers to assess more than 1% of students (approximately 10% of SWDs) using alternate assessments. You can find information on waivers for last year and the states asking for extensions for 2018-19 HERE. Only a few extensions have been requested so far, but many more will come.

The 1% cap was put in the law to prevent overuse of this assessment which has different expectations for achievement on state standards than the general assessment (although the content is still supposed to be aligned to grade level content). States are required to post their waiver requests, get public comment and include those comments when the request is submitted to the US Department of Education for approval. Parents should comment on whether they have seen any evidence of the steps the state claims it has taken to lower the use of alternate assessments (e.g. better IEP team guidance).

Rethinking Results Driven Accountability (RDA)

The U.S. Office of Special Education and Rehabilitative Services (OSERS) has announced that is it “rethinking” RDA, which is the system used to determine whether states are meeting the requirements of the Individuals with Disabilities Education Act (IDEA). According to OSERS, RDA was developed in 2014 to shift the balance from a system focused primarily on compliance to one that puts more emphasis on results. NDSC has long advocated for RDA to place a greater emphasis on least restrictive environment (LRE), especially data broken down by disability category. The vast majority of students with intellectual disabilities, especially those who take alternate assessments, are still educated in separate classrooms and schools in spite of decades of research demonstrating the importance of inclusive education for students with disabilities and their peers. NDSC’s input on “rethinking RDA” is focused on this issue. You can read the letter sent to OSERS by NDSC at https://www.ndsccenter.org/wp-content/uploads/NDSC-Comments-on-rethinking-RDA.pdf. In addition, the Advocacy Institute has submitted more general recommendations on RDA in a report that provides a through explanation of how RDA works. We support the additional recommendations made in this report. You can read that report HERE.

Parent Guide to State and Local Report Cards Under ESSA

The Every Student Succeeds Act (ESSA) requires states and school districts to publish report cards that include information on student performance and progress at the state, district and school levels. The U.S. Department of Education has released a parent guide about these report cards, which you can read HERE.

Proposed Regulations Regarding Immigrant Children

A Notice of Proposed Rulemaking was issued by the U.S. Department of Homeland Security (DHS) and the Department of Health and Human Services (HHS) that would impact immigrant children, including the services and supports children with disabilities would receive. Public comments on this proposed rule were requested. You can read the proposed rule HERE.

NDSC submitted comments which supported the position paper written by the Council of Parent Attorneys and Advocates (COPAA). You can read the COPAA paper HERE.

Self-Advocate Spotlight: Bryann Burgess

We had the pleasure of speaking with Bryann Burgess, who is an adult with Down syndrome who has benefited from the great work that our Senior Policy Advisor, Stephanie Smith Lee, has done in regards to higher education for individuals with disabilities. Bryann shares her story:

“My journey began in August 1988…I am the only child of my wonderful parents, Jim and Katie Burgess. I love living in Columbia, South Carolina….it has been a great place to grow up (GO GAMECOCKS!). Yes, I have Down syndrome, it is one part of me, but it has never defined me as a person.
Today my life is full and happy! I am living independently and work as a crew member at Trader Joe’s. I sing in the sanctuary choir and continue to teach children through Kindermusik. I am an actor and a board member with the Columbia Children’s Theatre and I have performed in 12 musicals at Town Theatre.
But just like everyone else, my journey thus far has been filled with uplifting highs and emotional lows, bumps in the road, painful and joyful learning experiences. So, let me now tell you about that journey, that brought me to my life today.
It started with the hearts and voices of the people in my community who loved and supported me, when I was too young to have a voice of my own. They gave me a wonderful childhood that included a fun play group who are still friends to this day, ballet and tap, swimming lessons, Kindermusik, Brownie’s, Girl Scouts, Indian Princess’s and youth basketball team with my Dad, Sunday School, children’s and youth choirs, Vacation Bible School, Methodist Youth Fellowship, mission and spiritual trips with the youth group, week long overnight summer camps in the mountains, visiting museums, and going to ballet and theatre performances, eventually auditioning for shows myself. Oh, and there was school!
I went to church pre-schools, then a Elementary Montessori, School called Harmony. In the fourth grade, my parents and I decided to try home schooling. We all loved it so much that I ended up being home schooled through high school. During those years, we went on amazing trips in a RV across the united states. We had so much fun while learned about history, geography, and nature.
So, now I was finished with high school. What now? No job, no chance for higher education, or so I thought. Now it was time to find my own voice. I was asked to speak to the education committee of the South Carolina Legislature and to a round table of educators from all of the universities in South Carolina about post secondary education opportunities for students with unique abilities. I was nervous, but I wanted my voice to be heard, that I wanted a chance to try to go to college, like my friends were doing. And after a lot of work and planning by many people, like Stephanie Smith Lee, we began the CarolinaLIFE program in the fall of 2008. There were three of us in the pilot program, wanting to make our voices heard, that Learning Is For Everyone.That is what the LIFE programs stand for. We were so successful, there are now five LIFE programs in South Carolina: USC, Clemson, College of Charleston, Coastal Carolina, and Winthrop. These programs are a two to four year, non-degree, but inclusive programs, designed for students who have unique abilities who want to have a college education. My classes at USC helped me to pursue my interest’s in music and theatre. Most importantly, the CarolinaLIFE program arranged an apprenticeship in teaching Kindermusik, a program that teaches infants and through kindergartners the joy of music, it was a perfect fit. I completed all of the requirements to become a certified Kindermusik teacher. Just like everyone else, I took University classes, lived on campus, was a part of student organizations and attended on campus events, and walked with everyone at graduation. After graduation, I worked on the staff for the CarolinaLIFE program for a one-year grant and continued to teach Kindermusik. I have given speeches to various organizations in South Carolina and other states. I am currently on the board for a documentary film called Intelligent Lives. This documentary wants to educate people to understand that intelligence testing does not begin to show what people are capable of accomplishing in their lives.
One of the most important lessons I have learned is to discover who is truly on my team…people who encourage and believe in me, respect and accept who I am with my own unique abilities, and have my back. Just like you, people with disabilities have feelings, emotions, hopes and dreams. Please listen to us and get to know us, so that you can support us in those dreams. See beyond the labels, to the beautiful people we are, with our own special abilities. We need meaningful jobs that will allow us to feel accepted, included and valued, and give us the opportunity to reach our full potential through our skills, determination and talents. And we will give back to you through our loyalty, hard work, and commitment to the job that you hire us to do.
Our country’s founding documents and the Pledge of Allegiance talk about justice for all. All…includes people with disabilities. Our nation’s laws, like the American Disabilities Act, have made a huge difference for those of us who have disabilities, but there is so much work to be done. Justice goes beyond charity; it is walking with the person in a meaningful way for as long as it takes to build a relationship. Now we must change hearts,one person at a time, as we are able.
Thank you for reading my story! Always remember that life is a journey, and the journey never ends.”

You can see more of Bryann’s accomplishments in these links:

Video/Interview about Bryann teaching

Bryann playing piano