In late December, The Tax Cut and Jobs Act (TCJA) was signed into law. The final bill contained some concerning provisions, such as the repeal of the Individual Mandate of the Affordable Care Act and a predicted $1.5 trillion in the federal deficit, which may lead to massive cuts to Medicaid through entitlement reform. NDSC will continue to advocate against Medicaid cuts, per capita caps and block grants and will keep you informed as entitlement reform efforts progress. HERE is an analysis of the final bill as it relates to the disability community written by our colleagues at the Center for Public Representation.
Withdrawal of Olmstead Employment Guidance
NDSC is very concerned by recent removal of Olmstead employment guidance by the U.S. Department of Justice. This guidance had detailed the obligations of states to administer their employment services for people with disabilities in the most integrated setting appropriate. We are confident that removal of this guidance does nothing to change the actual law and surrounding case law. However, we believe it reflects a diminished concern for providing employment services in the most integrated setting. NDSC signed onto a statement jointly issued by the CCD Rights Task Force and the Collaboration to Promote Self Determination (NDSC is a member of both) to express these concerns and call for more transparency in the guidance repeal process. (Click HERE)
RAISE Family Caregivers Act on Its Way to Becoming Law
Good news! The Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1028/H.R. 3759) has passed both the House and Senate with bipartisan support and is on its way to the President’s desk for signature. This bill would require the Secretary of Health and Human Services to develop, maintain and update a national strategy spanning public and private sectors to support family caregivers. The strategy will encompass things such as care coordination, training support, education, respite options and financial security issues. We are optimistic about the potential of this law to address the nationwide problem of poorly coordinated supports for caregivers. For a detailed summary of the bill, click HERE.
Significant Changes to ABLE in 2018
Achieving a Better Life Experience (ABLE) accounts have been available nationwide since June 2016, and currently thirty-one states plus the District of Columbia have launched ABLE programs. NDSC continues to be an active member of the ABLE National Resource Center (www.ablenrc.org) and would like you to note the following changes to the law that will take effect in 2018:
The annual contribution limit, formerly $14,000 per year, has been set at $15,000 for the 2018 tax year (it is tied to the federal gift tax and has been adjusted for inflation).
ABLE account owners who contribute their income to their own ABLE account may be eligible to take advantage of the Retirement Savings Contributions Tax Credit (otherwise known as the Saver’s Credit), subject to certain requirements.
It is now permissible to rollover funds from a regular 529 college savings account to an ABLE account without incurring any tax or penalty. These funds are subject to the annual contribution limit of $15,000.
ABLE account owners who have employment may be eligible to contribute up to an additional $12,060 above the annual contribution limit under the ABLE to Work Act, subject to certain requirements. Note that ANRC has some serious questions and concerns about how the ABLE to Work Act will be implemented and will be seeking guidance from the Department of Treasury and other agencies to try to maximize the benefit of implementation for ABLE account holders.
To learn more about these changes, please attend a free webinar by ANRC, “Changes to ABLE in 2018,” Thursday January 25, 2:00- 3:30ET. To register, click HERE.
Join us as we advocate for change!
NDAC has quickly grown to a strong group of over 80 individuals and 12 groups. We would love for you to join us! Receive the latest policy updates, advocacy tools and gain close access to our policy team of experts.
Signing up is as easy as filling out an online application and making sure your NDSC dues are current. Please click HERE for more information.
Johnny Collett is Confirmed as OSERS Assistant Secretary
The Senate has confirmed Johnny Collett for the position of Assistant Secretary of the Office of Special Education and Rehabilitative Services (OSERS). You can read background information on Mr. Collett HERE and watch a video of the confirmation hearing HERE. Mr. Collett has a special education administration background and therefore will bring knowledge of IDEA and state implementation to the job of Assistant Secretary.
Prior to the hearing, HELP Committee staff reached out to NDSC for questions to ask Mr. Collett. You can read the questions we provided HERE. A few of the questions were used, but unfortunately Mr. Collett did not provide direct answers or commitments on the issues.
Federal Feedback on State Plans Under the Every Students Succeeds Act (ESSA)
In the past month the U.S. Department of Education has provided interim feedback letters to the 33 states (and Puerto Rico) that submitted ESSA implementation plans for approval in the fall. Some of these plans have received approval in the past week. You can find these feedback letters, as well as the notes of individuals selected to review these plans (peer reviewers), by clicking on your state name HERE. If the plan has been approved, you will see a link to “Approved Plan” at the top of the state page.
In its interim feedback letters, the Department requested changes to all of the ESSA plans, but states were only given a short time frame to make revisions. It is not clear whether any state requested an extension. The due date for the revised plans is in your state’s interim feedback letter. All of the ESSA plans submitted in the spring have already been approved, except for Colorado.
Application Released for States Innovative Assessment Pilots
ESSA allows the U.S. Secretary of Education to approve innovative assessment pilots in up to seven states this year. The pilot states would be allowed to experiment with competency-based, interim, performance-based, computer-adaptive and other types of testing in certain districts. The goal is to eventually scale up the piloted assessments statewide in a way that meets federal accountability requirements.
The application for this program was recently released HERE.
New Hampshire, California, New York, Hawaii and Georgia are among the states that have previously expressed interest in this program. States must submit a notice of intent to apply by February 2, 2018 and must submit the application by April 2, 2018.
Whether or not these pilots are beneficial to students with disabilities will depend on what states do with this flexibility and how they address students who take an alternate assessment. The assessments in these pilots are required to “be accessible to all students by incorporating the principles of universal design for learning, to the extent practicable.” How well the states meet this requirement will be an important factor in determining whether students with disabilities have been considered in the development of the assessments.
Education Regulations at Risk
Regulations are documents that go through a specific approval process, including public input, and are binding on states. The purpose of regulations is to help inform states how to implement the laws. Guidance documents are also important tools to help states implement the laws but do not have the same binding effect, nor do they have to go through the same formal process as regulations before they are adopted or changed. We have shared information previously on guidance documents that have been rescinded by the Department of Education. We are even more concerned about the prospect of any threat to regulations.
Recently, the U.S. federal agencies were required to share the list of regulations on which they may take action in the next six months. This Fall Agency Rule List-Notice of Intent to Propose Regulatory Changes includes regulations under ESSA, IDEA and the Americans with Disabilities Act. This doesn’t mean there will be changes to the listed regulations, but it is a step that agencies must take before they can make changes. In addition, before making any changes the applicable agency would have to publish a Notice of Proposed Rulemaking (NPRM) and request public comment. NDSC will monitor this process and keep you informed. You can view the list HERE.
U.S. Department of Education Monitoring Report On Denial of Special Education Services in Texas
The U.S. Department of Education, Office of Special Education (OSEP) has found the Texas Education Agency (TEA) out of compliance with IDEA, the federal special education law. In a recently released monitoring document, OSEP stated “Through interviews with TEA officials and ISD and school staff, document reviews, listening sessions with parents, comments on an OSEP blog, and review of TEA’s policies and procedures OSEP has determined that TEA failed to ensure that its Independent School Districts (ISDs) properly implemented IDEA child find requirements, and consequently, failed to make FAPE available to all eligible children with disabilities residing in the State, as required by the IDEA. This failure resulted in improper reductions, over a period of years, in the number of children identified as having disabilities and needing special education and related services under the IDEA.”
The monitoring report outlines corrective action that must take place to ensure that the right of a student with a disability to receive an evaluation is not delayed or denied and that the state adequately ensures compliance with the law. The monitoring report can be found HERE.
An article in the Houston Chronicle first drew national attention to a state policy that caused special education services to be denied to eligible students. The advocacy of families and organizations contributed greatly to a state law being passed to overturn the policy and to OSEP’s attention to related policies that have denied students the services they need.
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.
Be sure to scroll down for the latest policy updates on tax reform and education policy
NDSC Policy Team Member Spotlight: Susan Goodman
Susan Goodman, a valued member of the NDSC for the past 17 years is retiring at the end of this year. We asked her a few questions about her journey. She will be truly missed! The impact she has made on the disability community has been incredible. We thank her for her hard work and dedication!
What prompted you to come work with NDSC 17 years ago?
After working in many different roles in the disability field (i.e. government, law practice, non-profit agency director), I decided my skills and interest were in policy and advocacy and that is where I could be most effective. And, I only wanted to work for a parent organization. I had worked for NDSC writing the newsletter and the opportunity arose for a policy and advocacy person on a national level. I jumped at it.
What are the biggest policy changes you have seen in recent years?
Inclusive Education – When I started my advocacy in the mid 70’s inclusion was called mainstreaming. Advocacy for mainstreaming was unheard of or only advocated by “kooks.” Inclusion of students in school, while still rejected by some school districts and parents, has advanced exponentially. Challenges, particularly in “quality education” remain, and the acceptance of real inclusion is still slow. The picture, however, is a world away from what was during that period.
Integrated Employment – Integrated employment in that era was unheard of. However, the University of Wisconsin at Madison, led by pioneer Lou Brown, were leaders in the field. Also, we owe a great deal to Madeleine Will who was the Assistant Secretary at the Department of Education. The Office of Special Education and Rehabilitative Services (OSERS), which Ms. Will led, made supported employment (the predecessor to competitive integrated employment) a priority and funded some sites that were implementing it. Like any new, pioneering, idea these initiatives were met with a lot of resistance in the field.
For example, when attending a presentation by Lou Brown, Dr. Brown told a funny anecdote about visiting a vocational center and seeing a man screwing and unscrewing bolts. He asked what the man was doing, and the reply was “pre-voc.” He went back a few years later and saw the man doing the same thing and asked again what he was doing. The supervisor replied “pre-voc.” I was present with two friends and fellow advocates. Out of 300 people in the room we were the only ones that laughed. The not-so-funny part is that there are still individuals doing the same activities in segregated settings.
We now see people working on real jobs although many challenges remain. Huge progress has been made in this area.
Independent Living – Individuals with disabilities lived in family homes when I started my advocacy journey. The “group home” model made its appearance after the Medicaid waiver program was instituted in the 1980’s. Prior to that, if a person with a disability lived in his or her own place, it was the parent’s responsibility. Sadly, that is still the case in too many instances. However, opportunities now exist for people to live in their own homes with the support they need.
In my opinion, this has been one of the most revolutionary changes to disability policy during the past 40 years, since the passage of the Education for all Handicapped Children Act (EHA) know known as the Individuals with Disabilities Education Act (IDEA) in 1975. People with disabilities are now participating in every walk of life. Prior to enactment of this law, society at large was not accessible, physically or otherwise. One of my wonderful mentors remarked, when talking about federally- funded vocational one-stop centers, “I don’t want people just to get in the door. I want access once they get inside.”
What do you see as the biggest threats to policy related to Down syndrome?
The biggest threat is identical to the one I faced when my son was born 40+ years ago – that society generally does not value people with disabilities. This devaluing leads to not only lack of funding, but lack of opportunity for individuals to be included all aspects of society.
Another threat is the attitude that individuals with disabilities, especially individuals with significant disabilities, cannot make their own decisions. With support, people can make their needs and desires known, if its verbal or nonverbal.
One of the biggest threats to the Down syndrome community is the notion that we should be advocating only for people with Down syndrome. While there may be specific issues only affecting people with Down syndrome that need out attention, we must be very careful not to alienate all people with disabilities in our advocacy for equal opportunities. We need all advocates and they need us. Our success to date has been our insistence that we do not sacrifice our fellow citizens for self-interest/political and personal opportunism. We advocate for all individuals.
What impact has working with self-advocates had on you?
Self-advocates have been my link to reality. They tell me what is important to them and how they want to be treated. They have been my most influential advocates and co-workers.
Which self-advocates have been most influential in working with?
I have met so many self-advocates in NDSC that have made a huge impact. I have loved working with the self-advocate board members. To date, I have worked closely with Daniel Chaplin and Chris Bennett. They have such a valuable message for us.
Others in the disability community include Ari Neiman, Samantha Crane and Julia Bascom from the Autisitic Self Advocacy Network. I wished I would have had their guidance when my son was born. Also, Liz Weintraub from AUCD has had an amazing impact on colleagues, legislators and legislative staff.
What advice would you give to advocates today?
“Be willing to compromise, but never compromise your values.”- Susan Goodman
Tax Reform Bills Update
With the Congress preparing to go on winter break shortly, there is a big push to get tax reform done in the next week. The House and Senate each passed their own version of the Tax Cuts and Jobs Act, both of which contained provisions that will be harmful to people with Down syndrome and other disabilities. (NDSC Policy & Advocacy Director Heather Sachs elaborates on these concerns in a recent podcast for Down Syndrome Affiliates in Action HERE) Both versions were then sent to a “conference committee” of Senators and Representatives to develop a final bill that will have components from each version. NDSC signed onto a letter with the Consortium for Citizens with Disabilities opposing the tax bills (HERE).
It was recently announced that an agreement had been struck by the Republican members of the conference committee on many major issues, so they are close to having a final bill and will likely push for a vote next week. (See HERE for list). While we have not yet seen the final version of the bill, and we are relieved to hear that certain deductions such as the medical expense deduction will remain intact and there will be some health insurance market stabilization put in place. However, we are still greatly concerned that these tax cuts will increase the deficit by $1.5 trillion dollars over the next decade and that the individual mandate under the ACA will be repealed, causing millions of people to lose insurance and premiums to increase.
The proposed tax cuts along with the repeal of the ACA individual mandate will increase the demand for Medicaid, decrease the funds available for home and community-based services and supports, and reduce the amount of revenue available to states to support Medicaid. In 2018, we will see another attack on Medicaid, as Congress works to pay for the deficit increase and convert Medicaid into block grants or per capita caps (HERE). Rest up and brace yourselves for more advocacy fights ahead.
Although it is likely that this dangerous tax bill will pass, our work is not done. One thing you can do to make sure that the voices of the disability community are not silenced is to participate in NATIONAL DISABILITY CALL-IN DAY on MONDAY DECEMBER 18. Join thousands of other advocates nationwide in calling your elected officials to urge them to vote NO on the tax bill and register your concerns about the impending Medicaid cuts that will result from the bill’s passage. Click HERE to register and get talking points. Please share on your social networks and let’s make some noise!
ABLE to Work Bill Concerns
To date, thirty states have launched ABLE programs and ABLE accounts are available to qualified people with disabilities nationwide. NDSC has been working along with the rest of the disability community for nearly a decade to pass the federal Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act and subsequent state ABLE bills. NDSC, a member of the Financial Security Task Force for the Consortium for Citizens with Disabilities, is also a founding member of the ABLE National Resource Center (www.ablenrc.org) and NDSC Policy Director Heather Sachs also serves in a dual capacity as the Senior ABLE Adviser for the ABLE National Resource Center. NDSC is very engaged on ABLE and has a high level of expertise in this area.
In April 2017, three ABLE “improvement” bills were re-introduced in Congress: (1) the ABLE Age Adjustment Act; (2) the ABLE to Work Act; and (3) the ABLE Financial Planning Act. See HERE for details of these bills. NDSC supported all three of these bills. Unfortunately, our position on the ABLE to Work bill has now changed and we are opposing the bill.
Last month, both the ABLE to Work Act and the ABLE Financial Planning Act were attached to the Senate version of the Tax Cuts and Jobs Act. The Financial Planning Act would allow people to rollover a regular 529 account into an ABLE account. The ABLE to Work Act would allow individuals and their families to save more money in an ABLE account if the beneficiary works and earns income. Specifically, in addition to the current $14,000 annual contribution cap, an ABLE beneficiary who earns income from a job could contribute additional funds from his/her compensation up to the amount equal to the Federal Poverty Level, which is currently at $11,770 (potentially increasing allowable annual contributions to $25,770). It is important to note that beneficiaries (who can contribute to their own ABLE account under current law) would still be subject to the caps related to earned income and substantial gainful employment (SGA). This bill would not allow individuals with disabilities the ability to disregard earned income (even if it is contributed to their ABLE account) for purposes of eligibility for SSI and Medicaid.
Shortly after it was attached to the Senate tax bill, the ABLE to Work Act was amended to address the administrative concerns of ABLE program administrators in order to remove the requirement that they provide safeguards against ABLE accounts receiving extra contributions beyond the annual cap (currently $14,000). NDSC, along with many other national disability groups who have analyzed this amendment and worked on ABLE issues, believes that the amendment would result in additional administrative responsibilities on people with disabilities and create unnecessary complexities. We believe that the current language, if passed, would leave individuals with disabilities, who are ABLE account owners, in a much more vulnerable position with respect to the loss of vital supports and services provided by various means tested programs. This is in complete contrast to the very intent of the ABLE Act, so NDSC has changed its position and now opposes the ABLE to Work Act. For more details, please see this letter from the CCD Financial Security Task Force HERE.
Now accepting NDAC Applications! Join the over 75 individuals and groups already advocating with us!
The National Down Syndrome Congress (NDSC) is thrilled to announce the launch of a new nationwide grassroots advocacy program, the National Down Syndrome Advocacy Coalition (NDAC). NDSC provides this service to educate its members and allies about policy issues and provide them advocacy tools and techniques they need to effectively engage with their legislators to advocate for change.
Led by NDSC’s Policy and Advocacy Team, NDAC consists of three types of members: Members, State Leaders, and Group Members. NDAC Members are volunteer advocates of all abilities and levels of advocacy experience. NDAC State Leaders are NDAC Members who have advanced advocacy experience and will serve in a volunteer capacity as NDSC’s main grassroots organizers for their states. State Leaders will be selected by NDSC staff through a rolling application process starting in January 2018.
NDAC Group Members are local, statewide or national groups that are Down syndrome-specific, cross-disability, other disability-specific or other allies who are interested in working together with NDAC on outreach, messaging and sharing information. This category of membership is primarily for informational purposes to educate NDAC Group Members about policy issues and to expand the reach of NDAC’S outreach and advocacy efforts through collaboration with other groups. NDAC Group Members are not obligated to undertake any advocacy activities on behalf of NDAC, though NDAC will provide them with templates and resources should they choose to push out certain information and messages to their group’s membership.
NDSC is currently accepting applications for NDAC Members [HERE] and NDAC Group Members [HERE]. Please email email@example.com any questions. NDSC will begin accepting applications for NDAC State Leaders in January 2018. All NDAC Members and State Leaders must be members of NDSC. Please visit Frequently Asked Questions for more information. We hope you will join NDAC and help us to fight for equal rights and opportunities for people with Down syndrome.
NDSC and the State of the Art Conference
NDSC is pleased to have once again supported the State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities. The conference took place in November at Syracuse University and was a resounding success! A concurrent Student Leadership Conference attracted college students with ID from around the country. NDSC Senior Policy Advisor Stephanie Smith Lee serves on the Executive Committee and spoke at the conference. NDSC Past President Marilyn Tolbert and Program Director Jolie Ganley attended. Click HERE to see the conference powerpoints and other materials.
Post-secondary Education for Students with ID and Reauthorization of the Higher Education Act
NDSC has long advocated for post-secondary opportunities for students with intellectual disabilities (ID), including advocating for the provisions in the Higher Education Opportunity Act of 2008 that authorized, for the first time, financial aid, model programs called TPSIDS, and a National Coordinating Center. Since then, post-secondary education options have increased substantially, with over 260 programs listed on www.thinkcollege.net.
Republicans introduced the Promoting Real Opportunity, Success, and Prosperity through Education Reform Act” (the “PROSPER Act”), H.R. 4508, to reauthorize the Higher Education Act (HEA). NDSC strongly supports the bill introduced by House Democrats, the Improving Access to Higher Education Act of 2017, H.R. 3199, which would add new disability programs to current law, new grants for Universal Design for Learning, and reauthorizes the ID provisions with improvements. See our letter urging the Committee to include this bill as an amendment to H.R. 4508. The amendment did not pass.
On December 12, 2017, the House Education and the Workforce Committee considered and “reported out” (voted to approve) H.R. 4508 along party-line votes. While NDSC is pleased that H.R. 4508 reauthorizes the ID provisions, we are very seriously concerned that it eliminates other key disability programs from current law. Read our letter to the committee Chair and Ranking Member here. This bill is expected to go the floor of the House of Representatives after the first of the year. We will continue to keep you informed about both House and future Senate action and let you know what you can do.
NDSC’s Response to Department of Education’s FAQ Document on Endrew F. Case
In March 2017, the U.S. Supreme Court delivered its opinion for the case Endrew F. v. Douglas County Schools District. The Court ruled that Individualized Education Programs (IEPs) must give students with disabilities more than a de minimis, or minimal, educational benefit. This is an important improvement in the standard by which free, appropriate, public education decisions must be measured. Recently, the U.S. Department of Education released a document with questions and answers regarding how Endrew F. impacts IEP team decisions. The text of the FAQ document is HERE.
The Department invited the public to submit questions and comments on the document to EndrewF@ed.gov. NDSC sent the Department an email that raises the following concerns with the answer to Question #17 on Least Restrictive Environment. If you share these concerns, please submit your own comments.
“The answer to Question #17 regarding placement does not reflect the strong preference Congress expressed in IDEA for the general education classroom. The answer discusses the requirement that there be a continuum of placement options, without the counterbalance of a discussion regarding the requirements that the general education classroom must be considered first by the IEP team and that the general education classroom is not the child’s LRE only if the student’s IEP cannot be implemented satisfactorily in that environment, even with the provision of supplementary aids and services. We request that this information be added to the answer, along with a reference to IDEA regulation 300.116(e), which states that a child with a disability is not removed from education in age-appropriate regular classrooms solely because of needed modifications in the general education curriculum.”
Advocacy Tips for State Waiver Requests on Alternate Assessment Participation and State-Defined Alternate Diploma
The Every Student Succeeds Act (ESSA) allows for the use of an alternate assessment aligned with alternate academic achievement standards (AA‐ AAAS) for students with the most significant cognitive disabilities. ESSA also places a 1% state-level cap on the number of students who can participate in the AA‐AAAS. Specifically, the state must ensure “that, for each subject, the total number of students assessed in such subject using the alternate assessments does not exceed one percent of the total number of all students in the State who are assessed in such subject.” This 1% cap equals approximately 10% of students with disabilities in most states, depending on the percentage of students with disabilities as compared to the percentage of all students who are being assessed. If a state anticipates that it will exceed this cap with respect to any subject for which assessments are administered, the state may request that the Secretary waive the cap for the relevant subject for one year. States are required to get public input on any request waiving ESSA requirements, including the 1% cap. NDSC and the Advocacy Institute (AI) developed an advocacy tips document for states in which these waivers are being requested. You can find the tips document HERE.
Some states are planning to develop a state-defined alternate diploma based on the criteria described in ESSA. Only students who take alternate assessment would be eligible for an alternate diploma. It is the only diploma, besides the regular high school diploma (the one that most other students receive), which can be counted in the calculation of graduation rate under ESSA. An alternate diploma can be a positive option for students with Down syndrome who have not been able to complete the requirements of a regular diploma, depending on whether it is done well. It should be noted that ESSA requires states not to preclude any student from attempting to meet the regular diploma requirements, including those who take an alternate assessment. Therefore, students who take an alternate assessment should not automatically be removed from the regular diploma track, even if the state has an alternate diploma. NDSC and AI Advocacy tips regarding an alternate diploma policy can be found HERE.
IDEA Significant Disproportionality Regulation
The U.S. Department of Education (Department) published the final significant disproportionality regulation in 2016. It was a direct response to the February 2013 U.S. Government Accountability Office (GAO) study showing widespread noncompliance by states with the provision in the 2004 Individuals with Disabilities Education Act (IDEA) requiring states to identify Local Education Agencies (LEAs) with significant disproportionality in areas related to special education: Identification; Restrictive Placement; and Discipline. In spite of this provision in the law, students of color continue to be identified for special education, placed in segregated classes and suspended, all at rates that are disproportionately higher than their White peers.
On October 26, Politico published a draft Federal Register notice, which had not yet been made public by the Department, seeking comment on whether to delay the compliance date for the 2016 regulation until July 1, 2020 (and postpone data collection regarding the rights of the youngest children until 2022). This draft notice suggested that the Department was considering the delay or amendment of this important regulation.
NDSC signed on to two coalition letters urging the Department not to delay or amend the significant disproportionality regulation. One letter was from the Leadership Conference on Civil and Human Rights (LCCHR). We posted a link to the sign on form for this letter on the NDSC Policy and Advocacy Facebook page because LCCHR was encouraging state and local groups to join the advocacy effort. We want to thank the groups representing students with Down syndrome who took the opportunity to be heard on this issue! You can read the LCCHR letter HERE. The other letter was from the Consortium for Citizens with Disabilities, which is posted HERE.
We are greatly disappointed by the recent notice from the Department confirming the intention to seek comments on a proposal to delay compliance with the regulation, in spite of the level of opposition already expressed by disability and other civil rights organizations. The text of the notice of intent is below. Once the actual request for public comments is released, NDSC will begin working on a response.
“The Department seeks comment on whether to extend by two years the compliance date of these regulations from July 1, 2018, to July 1, 2020, and, if so, whether to extend the date for including children ages three through five in the analysis of significant disproportionality with respect both to the identification of children as children with disabilities and to the identification of children as children with a particular impairment from July 1, 2020, to July 1, 2022.”
NDSC Provides Questions for OSERS Assistant Secretary Confirmation Hearing
On December 5, the Senate Health, Education, Labor and Pensions (HELP) Committee held a hearing on the confirmation of four appointees including Johnny Collett for the position of Assistant Secretary of the Office of Special Education and Rehabilitative Services (OSERS). You can read background information on Mr. Collett HERE and watch a video of the confirmation hearing HERE. Mr. Collett has a special education administration background and therefore would bring knowledge of IDEA and state implementation to the job of Assistant Secretary.
Prior to the hearing, HELP Committee staff reached out to NDSC for questions to ask Mr. Collett. You can read the questions we provided HERE.
Upcoming Hearing Featuring Secretary Of Education DeVos
Secretary of Education DeVos will go before the House Education and Workforce Committee on Wednesday December 20 at 2pm. This hearing is intended to examine the policies and priorities of the U.S. Department of Education. You can view a live webcast of the hearing or view an archived video of the hearing 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.
Announcing The National Down Syndrome Advocacy Coalition
The National Down Syndrome Congress (NDSC) is thrilled to announce the launch of a new nationwide grassroots advocacy program, the National Down Syndrome Advocacy Coalition (NDAC). NDSC was founded in 1973 as a membership-based organization dedicated to an improved world for individuals with Down syndrome, whose purpose is to promote the interests of people with Down syndrome and their families through advocacy, public awareness and information. NDAC will provide another NDSC member service – educating its members and allies about policy issues and giving them advocacy tools and techniques they need to effectively engage with their legislators to advocate for change.
“NDSC’s Policy and Advocacy Team has unparalleled expertise and experience in policy issues across the lifespan of people with Down syndrome such as early, elementary and secondary education, transition, postsecondary education, employment and the critical adult support systems such as Medicaid, health care and housing,” says NDSC Executive Director David Tolleson, and “NDAC will provide a formal mechanism to engage individuals – regardless of level of advocacy experience – in these efforts in order to maximize the power of our community’s voice.”
Led by NDSC’s Policy and Advocacy Team, NDAC will consist of three types of members: Members, State Leaders and Group Members. NDAC Members are volunteer advocates of all abilities and levels of advocacy experience. NDAC State Leaders are NDAC Members who have advanced advocacy experience and will serve in a volunteer capacity as NDSC’s main grassroots organizers for their states. State Leaders will be selected by NDSC staff through a rolling application process starting in January 2018. NDAC Group Members are local, statewide or national groups that are Down syndrome-specific, cross-disability, other disability-specific or other allies who are interested in working together with NDAC on outreach, messaging and sharing information.
NDSC is currently accepting applications for NDAC Members [HERE] and NDAC Group Members. Please email firstname.lastname@example.org if you are interested in becoming a group member. NDSC will begin accepting applications for NDAC State Leaders in January 2018. All NDAC Members and State Leaders must be members of NDSC. Please visit Frequently Asked Questions for more information. We hope you will join NDAC and help us to fight for equal rights and opportunities for people with Down syndrome.
Action Alerts Now Available- please sign up!
NDSC has recently added the technical capability to offer turnkey, simplified Action Alerts to our members and allies. This will help bring our grassroots advocacy to the next level by enabling the NDSC Policy & Advocacy Team to send you targeted alerts, match you up with your elected officials, and guide you through an easy process of sending messages to your legislators on important policy issues. It will also allow you to share NDSC’s Action Alerts with your networks easily & more effectively.
SIGN UP HERE to 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. Together, we can continue to advocate for laws and policies that will remove barriers and increase opportunities for individuals with Down syndrome. Please join us in these advocacy efforts and sign up today!
NDSC would like to thank Mitch and Julie Rothholz for their generous financial donation to license the Voter Voice system that allows for these Action Alerts. Mitch serves as an NDSC Board Member and is a Co-Chair of the NDSC Public Policy Advisory Council. Both he and Julie are passionate advocates, and we are honored to have them, and their son, Evan, as part of our NDSC community. We are so grateful!
Tax Reform Bills Update
The House version of the Tax Cuts and Jobs Act, H.R. 1, just passed the House on Thursday by a vote of 227-205 (See here). Last night, the Senate Finance Committee approved the tax proposal that was introduced on November 9, 2017. The Senate version is likely to be voted on right after Thanksgiving. The bills will then go to a conference between the House and Senate so that differences can be worked out before it goes to the President for signature.
There are some significant differences between both versions of the bill (e.g., the Senate version does not repeal the medical expense deduction often relied upon by individuals with disabilities), but both bills dramatically increase the federal deficit by $1.5 trillion dollars over 10 years (see here).
Although the current tax proposals themselves do not cut Medicaid, the road to cuts has already been paved by the budget resolution for Fiscal Year 2018.
The budget resolution allows the Senate to cut $5 trillion dollars in spending during the next decade, including more than $1 trillion dollars in cuts to Medicaid. The cuts authorized in the budget resolution will have a devastating impact on all federal programs that help people with Down syndrome throughout their lifespan — to be educated, develop job skills, attend post-secondary and other transition programs, and to live and work in the community.
The situation is changing every day as new amendments are introduced. On November 14, a provision repealing the individual mandate in the Affordable Care Act (ACA) was added to the Senate tax bill, essentially turning it into a health care reform bill. The Congressional Budget Office said this week that repeal would result in 4 million people losing their health insurance in the first year and 13 million in a decade. The House bill had no such provision.
We are greatly alarmed by this latest attempt to repeal the ACA by inserting repeal language into the Senate tax bill, and we recently issued an Action Alert [here] asking constituents to call their Senators and urge them to oppose any tax bill that includes this health care reform attempt. As always, NDSC is working with other national disability groups to monitor and analyze developments regarding the bill. We will continue to keep you updated and encourage you to call your Senators!
Left to right – Madeleine Will (NDSC Public Policy Council Member),
Heather Sachs, Stephanie Smith Lee, Ricki Sabia
Secretary of Education’s Proposed Priorities for Discretionary Grants
On October 13, 2017 the Secretary released a document that proposed 11 priorities for discretionary grant funding and related definitions. Stakeholders were given until November 13, 2017 to provide comments. NDSC developed detailed comments recommending amendments to all of these priorities. These recommendations would provide greater consideration of individuals with disabilities and the strategies that benefit them (e.g. Universal Design for Learning, customized employment, Positive Behavioral Interventions and Supports, etc.). They also address specific issues that impact postsecondary programs for students with disabilities. You can read NDSC’s comments here. Priority 1 of the Secretary’s proposed grant priorities deals with educational choice. The NDSC comments make it clear that certain issues, including accountability and civil rights under federal laws, must be addressed before federal funds can be used for private schools or private educational programs. The reasons for these concerns are discussed in an article available here.
Amicus Brief for 9th Circuit Case Involving a Child with Down Syndrome
NDSC, two state Arc chapters and the Association of University Centers on Disabilities, as well as NDSC Senior Policy Advisor Stephanie Smith Lee (as former Director of the Office of Special Education Programs) and NDSC Policy Advisory Council member, Madeleine Will (as former Assistant Secretary of Education) signed onto an amicus brief filed by the Bazelon Center on October 30, 2017 in the 9th Circuit Court of Appeals. Stephanie, Madeleine and Ricki Sabia provided input into the brief.
The brief is in support of a child with Down syndrome in Arizona and his parents. The case is a result of the parents’ efforts to have their son included in general education classes in the Gilbert Unified School District. This case is important for many reasons, including the fact that it will give the Circuit Court an opportunity to interpret the Endrew F. Supreme Court case. The Endrew F. case raised academic expectations for students with disabilities by saying that a free, appropriate public education (FAPE) must mean much more than minimal educational benefit, which was the standard for FAPE previously used by many courts. You can read the full brief here.
NDSC Letter to Secretary DeVos on Rescinded Guidance Documents
President Trump issued an Executive Order last winter, which created a task force at each federal agency that would be responsible for combing through existing guidance documents and regulations to determine which ones can be repealed or modified as outdated, unnecessary or ineffective. Guidance documents and regulations provide details to states and districts on how they should be implementing federal laws. Guidance documents can be rescinded without formal procedures, but regulations require a more involved process that includes stakeholder comment. The difference is because regulations are legally binding, whereas guidance describes the Department’s current thinking on an issue.
In October the task force at the Department of Education rescinded more than 500 guidance documents that were deemed to be outdated. Since very little information was provided about some of these documents and the reasons for their rescission, it is impossible to be certain of the impact. However, it does appear that most of these documents were outdated and/or have been replaced with more current materials. NDSC’s primary concerns are the lack of transparency in the process and the need for stakeholder input before the task force moves on to make determinations that any guidance documents or regulations are unnecessary or ineffective, which is the next phase of the process.
NDSC sent a letter expressing these concerns to Secretary of Education DeVos, with a copy going to the Acting Assistant Secretaries for the Office of Special Education and Rehabilitative Services, the Office of Elementary and Secondary Education and the Office of Postsecondary Education. You can read the letter here.
NDSC Joins with Advocates to Urge the Secretary Not to Approve the ESSA Plans for Florida, New York and Texas
Both the Florida and New York ESSA plans egregiously violate the assessment and accountability provisions of the law in ways that would set a terrible precedent for other states. Therefore, NDSC joined other national organizations to oppose the approval of these plans by the Secretary of Education. You can read the letter regarding the New York plan here and the Florida plan here.
In addition, NDSC signed on to a letter from Texas advocates to the Secretary about the Texas Education Agency’s lack of responsiveness to stakeholder concerns about their state ESSA plan. The letter asks the Secretary to send the plan back for revisions. The Texas letter can be found here.
NDSC and Kansas Advocates Express Concerns about ESSA Accountability
NDSC and Kansas advocates Jawanda Mast and her daughter Rachel are featured in a public radio article that discusses how the Kansas ESSA plan will exclude almost half of its schools from accountability for students with disabilities. This issue, called N-size, is a problem in many state plans. You can learn more about N size by reading the article here. In addition, you can listen to a great audio clip of Jawanda and Rachel, as well as Rachel’s principal, talking about accountability and inclusion. Click on the “Listen” button under the photo at the beginning of the article to hear the interview.
New ESSA Advocacy Tool Regarding Alternate Diplomas
NDSC and the Advocacy Institute have created a tool to help advocates know what should and should not be in policies regarding a state-defined alternate diploma for students who take alternate assessments under ESSA. If your state is planning to develop an alternate diploma, check out the advocacy tips here.
Did you know that Down syndrome is stillone of the least-funded genetic conditions at the National Institutes of Health (NIH), despite being the leading cause of development delay in the US and in the world?Members of congress, internationally recognized researchers and leaders in the Down syndrome community testified today before theU.S. House of Representatives AppropriationsSubcommittee on Labor, Health and Human Services, and Education.
The hearing began with words from Representative Pete Session (R-TX) and Cathy McMorris Rodgers (R-WA), who both are parents to individuals with Down syndrome. Cheri Bustos (D-IL) also spoke as the Co-Chair of the Democratic Policy and Communications Committee.
The committee then heard from a panel that included:
Michelle Whitten, President & CEO of the Global Down syndrome Foundation
Dr. William Mobley, Executive Director for the Research and Treatment and Florence Riford Chair of Alzheimer’s disease Research
Dr. Joaquin Espinosa, Executive Director, Linda Crnic Institute for Down Syndrome
Frank Stephens, Quincy Jones Advocate, Global Down Syndrome Foundation
The committee heard powerful testimony from Frank Stephens, which brought the room to tears. “I am a man with Down syndrome and my life is worth living.” You can listen to his testimony here.
Down syndrome research provides unique opportunities to examine the extra chromosome inindividuals. People with Down syndrome are more likely to develop Alzheimer’s disease, less likely to develop tumorous cancerous and very rarely have heart attacks. However, 50% of babies are born with a chromosomal defect and juvenile leukemia has an increase likelihood. Research into these special circumstances could help lead to medical breakthroughts for not only individuals with Down syndrome, but everyone. The committee and panel made sure to point out, this research is not to find a cure or eliminate the prevalence of Down syndrome, but find cures to conditions that are associated with Down syndrome- such as Alzheimer’s disease.
Thank you to the Global Down Syndrome Foundation for organizing this hearing and the many advocates that came from all throughout the country. The room was so packed that there was an overflow room.
The entire hearing was recorded by CSPN and is available here.
Pictured left: Heather Sachs, Michelle Sie Witten and her daughter, Sophia, Debbie Revels (ED of DSA of Jacksonville FL) and Dr. Espinosa.
Pictured right: Advocates from numerous states with Frank Stephens, who gave testimony during the hearing.
Self-Advocate Spotlight: Frank Stephens
As mentioned above, Frank, who is from Virginia, delivered powerful testimony at an NIH hearing this month. The video of his testimony has since gone viral- shared throughout the world and by thousands of people.
How did you prepare for the testimony?
I only had a few days’ notice of the hearing, so I had to work faster than usual. I was speaking for the Global Down Syndrome Foundation. I asked Michelle Whitten of Global what was most important to them. I then looked for parts of speeches I had written before that I wanted the subcommittee to hear. The hardest part was making it only five minutes long. When I knew what I wanted to say, I practiced speaking it aloud until I was comfortable with it. Then I had my Dad time me. I had to cut some parts to get it down to five minutes. It was a little longer at the hearing, but that was because people laughed and applauded. The Committee did not seem to mind.
What do you believe was the most important point you addressed with the subcommittee during the hearing?
Because it was an Appropriations Subcommittee, the most important point was that they need to give funds for research. No matter how many people see the testimony, only the subcommittee can put funds in the budget. I also believe it is important every time I speak to make sure that people understand that people with Down syndrome lead good lives. We live, love, laugh, and work just like everyone else. Our lives are worth living.
The video of your testimony has now gone viral. Did you imagine that it would be shared across the globe? How has this experience impacted you?
No one could have expected how this testimony has spread. I did not expect it, but I love it. I am a big ham and I love attention. I am so happy that millions and millions of people have seen the testimony and are thinking and talking about the value of our lives.
What advice do you have for other self-advocates who are interested in getting more involved in advocacy? How did you get started?
I have been speaking in public for almost fifteen years. Advocates should figure out what they do best and work hard at that. The best advocacy is living a full life and showing the world how much you can do. Whatever you do to advocate, you must be willing to work very hard at it. You must practice, practice, practice. I think I was born to perform. It is what I love. I think of every speech I do as a performance. That doesn’t mean what I say is not true. It just means that I want to have the most impact that I can. Every time I speak, I think about the audience and how I want to “make them laugh, make them cry, and make them think.” I’m pretty sure it worked this time.
State of the Art Conference
NDSC is pleased to co-sponsor the State of the Art Conference that is taking place this week at Syracuse University. We are represented by NDSC Past President Marilyn Tolbert, NDSC Program Director Jolie Ganley, and Senior Policy Advisor Stephanie Smith Lee (speaking at a plenary session). Almost 400 are attending the conference, including 90 students and attendees from four foreign countries.
ABLE Act Update
NDSC is a founding member of the ABLE National Resource Center (“ANRC”) and continues to actively participate in ANRC’s informational campaigns and outreach. The NDSC Policy Team will be participating in a Congressional briefing on ABLE Act Implementation on December 4, 2017 from 10:00am – 12:00pm in Washington DC. The briefing will be hosted by the ABLE National Resource Center (ANRC), sponsored by Senator Robert “Bob” Casey, Representative Pete Sessions and Representative Cathy McMorris Rodgers, in collaboration with the Consortium for Citizens with Disabilities (CCD) Financial Security Taskforce and the National Association of State Treasurers (NAST) ABLE Committee. It will explore account owner demographics, number of accounts open, contribution levels and other significant data points. It will also highlight successes, examine implementation challenges, and look into the future with respect to legislative recommendations to strengthen ABLE. Members of Congress, their staffs, disability advocates and other ABLE stakeholders are invited to attend this briefing – click here to register.
We are happy to report that ABLE account holders will be able to save even more money in their accounts starting in 2018. Due to inflation adjustments recently announced by the Internal Revenue Service, the annual contribution limit to ABLE accounts will be raised from $14,000 to $15,000 beginning in January 2018. This will enable people to save more funds in their ABLE accounts without jeopardizing much-needed benefits such as Medicaid and Supplemental Security Income.
There are nearly thirty states that have already launched ABLE programs, most of which are available to qualified individuals with disabilities nationwide. (See www.ablenrc.org for more details).
Over the past ten months, NDSC has been working closely with the broader disability community to defeat various Congressional proposals that aim to repeal the Affordable Care Act (ACA) and make massive cuts to and impose caps on Medicaid spending. The most recent proposal to be defeated was the Graham-Cassidy bill, for which NDSC submitted written testimony in opposition, found here. These successful advocacy efforts to defeat Graham-Cassidy and its predecessors have been attributed to people with disabilities, their families and allies who made their voices heard and shared their personal stories. THANK YOU FOR PARTICIPATING IN THESE ADVOCACY EFFORTS – THE DOWN SYNDROME COMMUNITY HAS MADE A HUGE DIFFERENCE!
Unfortunately though, the threats to Medicaid and health care from both Congress and the Administration continue through different avenues: the budget process and Executive Orders.
On October 5, the House passed the 2018 budget resolution that includes plans for trillions of dollars in spending cuts over a decade in Medicare and Medicaid (read here for more information). The Congressional Budget Office defines a budget resolution as: “A concurrent resolution (adopted by both Houses of Congress) that sets forth a Congressional budget plan for the budget year and at least four outyears. The plan consists of targets for spending and revenues…” (Source: https://definedterm.com/budget_resolution).
The Senate just passed its own budget resolution on October 19. It includes $5.71 trillion dollar cuts over the next decade from domestic programs, including $1.7 trillion dollar cuts to Medicaid. Because the Senate and House plans are not identical, they will either need to go to a conference to be reconciled or the House may just decide to accept the Senate budget as-is, which would further expedite the tax reform process. These tactics will allow the Senate proceed to a reconciliation bill that will enable the budget to be passed with just 51 votes, not the usual 60 needed for major bills. The Congressional Budget Office defines a reconciliation bill as “A bill reported pursuant to reconciliation instructions in a congressional budget resolution proposing changes in laws that, if enacted, would achieve the budgetary goals set forth in the budget resolution.” (Source: https://definedterm.com/reconciliation_bill). Once Congress approves a budget, it will then start writing a tax bill based upon the passed budget. We are very concerned that Congress will use deep cuts to Medicaid to finance tax reform through this process.
We are also very concerned about an Executive Order signed by President Trump on October 12 that aims to create cheaper health care plans with weaker protections. Although this Executive Order is about private health insurance and not Medicaid, it is likely to impact people with pre-existing conditions, including people with disabilities. Such health plans have the potential to increase the cost of health care for people with serious health conditions (including disabilities), and insurers may leave the marketplace, resulting in market destabilization. (read here for more information)
It appears that Congress may share these concerns about this Executive Order, as there is a bipartisan effort by Sen. Alexander (R-TN) and Sen. Murray (D-WA) to broker a deal that would provide subsidies to insurance companies for two years to help stabilize the market. (read more) However, both President Trump and Speaker of the House Paul Ryan (R-WI) are opposed to the agreement which makes passage unlikely. (read more)
The fight to protect our health care and Medicaid is not over. NDSC will continue to advocate on the front lines for these issues along with the broader disability community. We will keep you informed when urgent action needs to be taken. In the meantime, please continue to share your personal stories with your elected officials about how much Medicaid means to you and people with disabilities, as well as how much you rely on health care that does not discriminate against people with pre-existing conditions.
On October 15, NDSC received notification from the family of Sean Cross about a discriminatory incident upon a United Airline’s flight. The next day, NDSC’s Executive Director, David Tolleson, sent a letter to United Airline’s CEO and Customer Care department. The letter, which can be found here, outlined the incident upon the flight and reiterated United’s policy according to their website. The crew members did not ask Sean if he was capable of providing assistance to others in an event of an emergency and he was asked to move simply because of his appearance. The crew also refused to speak to Sean directly and made very loud, rude and public announcements to the whole airplane full of passengers. NDSC has suggested that United review its diversity sensitivity training as well as send an apology to Sean and his family.
Brenda Cross, Sean’s mom, sent this follow-up to NDSC:
“On behalf on my son Sean and our entire family I want to thank you for your advocacy in regard to the incident on United flight 783. I am reminded once again how fortunate we are to have such a strong support network through our local and national groups. As parents who have been lifelong advocates for our son Sean, we were shocked at the behavior of the flight crew, and disappointed in the reaction from other passengers. Due in large part to the advocacy of the National Down Syndrome Congress, advances in education, employment, and social acceptance have had a positive impact on the lives of our children with Down syndrome. I didn’t expect this type of situation to occur in 2017. My hope through our continued focus on this issue is that United – and other airlines –will establish a formal training process to address how they treat all individuals with special needs. Specifically, how to use people-first language and to treat everyone with respect. I want to thank you again for reaching out and fighting for the rights of my son, and all individuals with Down syndrome.”
Every Student Succeeds Act (ESSA-replaced No Child Left Behind -NCLB)
Almost all of the 17 ESSA plans that were submitted to the U.S. Department of Education in April and May have received approval. The remaining 34 states and Puerto Rico submitted their plans in September and October, and are ready for review. NDSC has been reviewing the approved plans and the newly submitted plans. We are concerned that most of these plans are missing required provisions or have provisions that are not in compliance with the law. We have shared our concerns with Congressional staff. You can view submitted and approved plans by clicking on the state name here.
There was a Senate hearing on October 3, 2017 in which a witness, Dr. David Steiner from the Johns Hopkins Institute for Education Policy, mentioned a number of the problems with state plans that NDSC has identified in its analyses. You can view the hearing video here and read Dr. Steiner’s testimony here. NDSC will continue to advocate for accountability under ESSA regarding the academic performance of students with disabilities and other historically marginalized students.
Edweek has developed a resource to help keep advocates informed about the status of ESSA state plans. View it here.
National Technical Assistance Center for Inclusive Practices and Policies
The U.S. Department of Education has awarded a five-year, $10,000,000 grant to the National Center on Educational Outcomes and its partners to establish a new Center on Inclusive Practices and Policies. NDSC is thrilled to announce that its Senior Education Policy Advisor, Ricki Sabia, will serve as a Parent Advisor and Liaison to this Center. The primary outcomes of the Center are to provide assistance to states and districts to improve the quality of instruction for students with significant cognitive disabilities in inclusive environments through the use of existing curriculum and instructional materials and to provide models and coaching to both general education and special education teachers to create more inclusive opportunities. For details about the goals to support these outcomes see the announcement.
Universal Design for Learning
On October 3-4, NDSC attended and presented at a National UDL Policy Council meeting. NDSC shared two of its resources at this meeting. One resource is called ESSA Requirements and Local Education Agency (LEA) Advocacy Tips, it can be found here. This resource explains the requirements in ESSA regarding the development of LEA (school district) ESSA plans and describes the opportunities for advocacy regarding UDL and inclusive education, as part of this process. We also shared a Google document in which the UDL language from each state’s ESSA plan is pasted. This document will be updated as plans are approved and can be found here.
For the remainder of the meeting, NDSC acted in an advisory capacity as decisions were made regarding the UDL Credentialing and Certification Initiative. This is an initiative to develop a UDL credentialing and certification process to recognize best practices in education program design, product development and classroom instruction. You can read more about this initiative at http://www.udlcci.org/.
NDSC Works on Endrew F. Amicus Brief for 10th Circuit Court
In March 2017, the U.S. Supreme Court delivered its opinion for the case Endrew F. v. Douglas County Schools District. The Court ruled that Individualized Education Programs (IEPs) must give students with disabilities more than a de minimis, or minimal, educational benefit. This is an important improvement in the standard by which free, appropriate, public education decisions must be measured. The Endrew F. case was remanded (sent back) to the 10th Circuit to be decided using the Supreme Court opinion as a guide.
The Bazelon Center for Mental Health Law filed an amicus brief with the 10th Circuit Court, which was signed by other organizations, including NDSC, and former U.S. Department of Education officials, including NDSC Senior Policy Advisor Stephanie Smith Lee (former Director of the Office of Special Education Programs) and NDSC Policy Advisory Council member, Madeleine Will (former Assistant Secretary of Education). An amicus brief is a legal document filed in court cases by organizations and individuals who are not parties in the case, but have a strong interest in the subject matter. Stephanie Smith Lee, Madeleine Will and Ricki Sabia also provided input into the brief as it was being developed. You can read the 10th Circuit amicus brief here.
Self-Advocate Spotlight: Madison Essig
Madison Essig is a sophomore in the Mason LIFE program at George Mason University in Fairfax, Virginia. She is a member of Campus Democrats, Hillel, and Gamma Phi Beta sorority, and serves as the Mason LIFE representative to the GMU Student Government. She lives on campus with two roommates and takes three university classes along with LIFE program classes. Photo credit: Ruby’s Rainbow (rubysrainbow.org)
What problem did you address at George Mason?
Last year, after serving as a Mason LIFE representative to the GMU Student Government, I decided that I wanted to run for a position as a Student Senator. I submitted the required materials but was told that I could not run because as a student in the LIFE program I was not a regular undergraduate student. This was not the first time that I learned that Mason LIFE students were not fully included at GMU. I sought to rush a sorority last year and was told that I would not get a bid because I was not a “Mason Student” but a “Mason LIFE student.” I advocated to have the status of Mason LIFE students changed. I explained to GMU leadership that it was not fair to me to exclude me from joining a sorority and that I should be allowed to be a part of all campus activities. At the end of the school year, GMU changed the status of Mason LIFE students to “Mason Students” so that we can participate in Greek life. For Student Government, I had to advocate further, as the Student Body Constitution required that students be “undergraduate” students in order to run for office, vote in student body elections or hold a position.
How did you advocate to change this?
I talked to Student Senators about the need to change the rules to allow Mason LIFE students to participate fully in Student Government. The Constitution said that the Senate represented “all students” at GMU, but that was not true. The GMU students in the LIFE program were not included. I came up with a plan to formally amend the Constitution. I worked with some Senators to draft proposed language to amend the Student Body Constitution. There was a public hearing on the proposed language. I spoke at the hearing to say why it is important for all students to be able to have a vote and run for office. The proposed language then went to a first reading and was referred to a committee. It passed the committee and became “Madison’s Bill”. The bill then went into a second reading and was again debated. I again spoke on behalf of the bill. Some students spoke out against the bill. Their comments made some LIFE students feel that they were not valued equally. Madison’s Bill was then voted on by the Senate and passed by a 16-3 vote. The final step to amending the Constitution was a student body vote on Madison’s Bill.
What was the outcome?
Madison’s Bill was voted on by the GMU Student Body on October 4, 2017. It passed by majority vote. Mason LIFE students can now vote in Student Body elections, run for office and hold positions. I am proud to have made this change so that Mason LIFE students are now recognized as full members of the GMU student body. I hope other colleges and universities do the same thing and recognize all students as equal.
NDSC Sponsors SOTA Conference
NDSC is a proud sponsor of the State of the Art Conference on Postsecondary Education and Students with Intellectual Disabilities, which will take place November 15 & 16, 2017 in Syracuse, New York. This outstanding conference brings together students, family members, university and college faculty, program staff and others to learn from one another and network. NDSC Senior Policy Advisor, Stephanie Smith Lee, was instrumental in developing the conference and serves on the Executive Planning Committee on behalf of NDSC.
Limited scholarships are still available for family members. See: http://www.sotaconference.com for more info. See below for info about the Student Leadership Conference, which will be taking place at the same time.
NDSC Policy Staff Attend Briefing on Disability Employment
NDSC Policy & Advocacy Director Heather Sachs and NDSC Senior Policy Advisor Susan Goodman attended a Congressional briefing in celebration of National Disability Employment Awareness Month that was sponsored by the Collaboration to Promote Self-Determination (www.thecpsd.org), of which NDSC is a founding member. The briefing, entitled “The Workforce Innovation and Opportunity Act (WIOA) of 2014 Advisory Committee Recommendations and Legislative Opportunities,” reviewed the key findings of the WIOA Advisory Committee and highlighted state, employee, and employer perspectives and best practices. Speakers included Dr. David Mank, Chairman of the WIOA Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities; Charles Hill, General Manager of Embassy Suites Washington DC Convention Center, Patti Killingsworth, Assistant Commissioner and Chief of Long-Term services and Supports and Laura Kustner, Consumer Products Safety Commission.
The handouts, written testimonies and other materials from the briefing are available here.
The RAISE Family Caregivers Act (S. 1028/H.R. 3759) Advances to the House
The Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act (S.1028/ H.R. 3759) has unanimously passed the Senate and has gone to the U.S. House of Representatives. There are an estimated 40 million family caregivers nationally who spend countless hours assisting parents, spouses, children and adults with disabilities, or other loved ones with activities such as medical tasks, meals, transportation and other services that enable them to live as independently as possible at home and in their communities. NDSC supports this bill, which would lay the groundwork for the development of a national plan to address the needs of family caregivers – including those who support people with Down syndrome and other disabilities.
ADA Education and Reform Act of 2017 (H.R. 620)
NDSC has joined with over 250 disability groups in a letter of opposition to H.R. 620, the Americans with Disabilities (ADA) Education and Reform Act of 2017. The bill would require someone who faces discrimination or illegal lack of accessibility to a public accommodation to give written notice to the owners of the non-compliant public accommodation and a sixty-day window to the owner to research the issue and plan for improvements before the aggrieved individual with a disability can file a lawsuit. Aimed at targeting frivolous lawsuits, NDSC along with our allies believes that this bill would place an undue additional burden on people with disabilities and sets a bad precedent for civil actions under the ADA. Instead, we argue that Congress should consider legislation that would help businesses to comply with the ADA. Unfortunately, this bill has gained traction in the House. On September 7, the bill was voted out of the House Committee on the Judiciary and will now be scheduled for a House floor vote. The bill continues to gain cosponsors and the support of businesses and trade associations. To date, there is no companion bill in the Senate.
Policy & Advocacy Action Alert | September 22, 2017
We all need to take action, and we need to do it NOW. The Graham-Cassidy health care billwill have devastating effects on the Down syndrome and broader disability community. People with pre-existing conditions will suffer from less coverage and higher premiums, and there will be drastic cuts to Medicaid and the community supports upon which people with Down syndrome rely. See here for more information.
Things will move very quickly over the next week and advocates need to act aggressively to defeat this bill. Majority Leader Mitch McConnell has announced his intention to bring this bill to a vote on the Senate floor next week. If it passes the Senate, it will go immediately to the House for a vote and Speaker Paul Ryan has said he would pass it without amendments. President Trump has stated that he will sign it. If we do not act quickly, this bill could become law.
We realize that at least two Republican Senators, Senator McCain (R-AZ) and Senator Paul (R-KY) have recently issued formal statements of their intentions to vote NO. Do not let this stifle our advocacy efforts. In fact, we need to push harder to bring some others to come out as firm NO’s. We cannot back down!
1. CONTACT YOUR SENATORS AND REPRESENTATIVE AND ASK THEM TO OPPOSE THIS BILL OR ANY OTHER BILL THAT WOULD CAP AND CUT MEDICAID! Calls are best, but email and social media is also effective.
Go to www.protectourmedicaid.org for a call script, talking points and a social media toolkit.
Please call today and every day until September 30. Leave messages and call back if the line if busy or the mailbox is full!
Use hashtags #SaveMedicaid, #ProtectOurCare, #NoCutsNoCaps, #KillTheBill
2. SUBMIT TESTIMONY TO THE SENATE FINANCE COMMITTEE IN OPPOSITION TO THE BILL
The Finance Committee will be holding a hearing on the Graham-Cassidy bill on Monday September 25 at 2:00pm. The hearing record needs to be filled with strong statements of opposition from organizations and individuals who share their personal stories about the potentially devastating impact of this bill.
Use this as an opportunity to tell your personal story; include photos in the document as well!
This testimony should be typewritten, single-spaced and not longer than 10 pages in length.
The following information must be included on the first page of your statement:
Title Of Hearing: Graham-Cassidy Bill Hearing
Date of the Hearing: September 25, 2017
Full Name (of individual or organization)
Copy your Senators and Representatives or their staff on your testimony.
3. SHOW UP AT HEARINGS, RALLIES, PROTESTS AND OTHER EVENTS
For those who live in the DC area, please consider attending next week’s press conferences, protests and hearings. For those outside of the DC area, find a local event (or create one!). You can find a list of events here. There is power in numbers!
4. PARTICIPATE IN THE NATIONAL DISABILITY CALL-IN DAY TO SAVE MEDICAID ON MONDAY, SEPTEMBER 25
Join people with disabilities, families, and advocates around the country as we make sure our Senators’ phones are ringing off the hook with opposition to the Graham-Cassidy bill on Monday September 25. Call the Senate switchboard at: 202-224-3121 and use the sample talking points here. You can also register for this event through Facebook here.
Please share this information widely and encourage your friends and family to advocate against this bill. Together, we can defeat it but we need to ACT NOW. Thank you for your advocacy efforts!