In 2008, the Higher Education Act (HEA) was amended to allow certain financial aid for postsecondary students with ID and to authorize model inclusive programs, called Transition Programs for Students with Intellectual Disabilities (TPSIDs), and a National Coordinating Center (NCC), which was awarded to Think College (see www.thinkcollege.net).
Congress is now considering legislation to once again reauthorize the HEA. The House Education and Workforce Committee approved H.R. 4508, which includes the HEA ID provisions, and the Senate HELP Committee is working on drafting their bill. Senators Alexander and Murray have requested input on the reauthorization by February 23, 2018. Now is the time for all local, state and national organizations that support higher education opportunities for students with ID to join together with NDSC to let the committee know how important these opportunities are for students with Down syndrome and others with ID. Organizations, coalitions, postsecondary programs, etc. are invited to sign on to a letter supporting the ID provisions and suggesting improvements developed by the Inclusive Higher Education Committee (IHEC).
This committee is co-chaired by NDSC, and was formed in 2006 to encourage Congress to address higher education for students with ID and drafted the ID provisions included in HEOA 2008. The IHEC has continued to collaborate with Congress, the Administration and organizations regarding implementation, appropriations, and reauthorization of these provisions as this innovative educational option has increased to over 260 programs around the country. Encourage your organizations to sign on to the letter by COB February 22 to meet the committee deadline. Organization sign ons will continue to be accepted until March 2 for those who cannot make the earlier timeframe and the letter will be sent to the full Senate HELP Committee at that time.
Click HEREto read the letter, specific recommendations and the list of IHEC members.
NDSC also signed on to a letter submitted by the Consortium for Citizens with Disabilities that addresses a number of key aspects of the HEA reauthorization.
Strategies to Improve Outcomes for Transitioning Youth on SSI
This winter the Social Security Administration (SSA) requested comments from the public on strategies to improve adult outcomes for youth who receive Supplemental Security Income (SSI). NDSC submitted comments with recommendations on improving outcomes through an emphasis on inclusive higher education opportunities for students with intellectual disability (ID), including a proposed demonstration project; increasing Work-based learning experiences, such as internships, short-term employment, and apprenticeships while students are still eligible for IDEA services; utilizing the principles of Universal Design for Learning in developing SSA materials; and delaying the required continuing disability reviews (CDRs) for SSI for students engaged in transition-to-work activities and changing the mandatory SSI redetermination from age 18 to age 22 to parallel the time frames under the Individuals with Disabilities Education Act (IDEA) and Social Security’s Disabled Adult Child program. Other organizations utilized the NDSC comments as a basis for their organization comments to SSA.
President Trump’s 2019 budget proposal cuts $3.6 billion from education. This a much less of a cut than the $9.2 million decrease that was requested last year, but advocates are concerned about the programs being targeted for elimination. School choice is a big winner in the budget with $1 billion being allocated for private or public school choice “opportunity grants.” Another $500 million is allocated for charter schools. Meanwhile, funding for the Individuals with Disabilities Education Act did not get any increase, in spite of how far current funding is below the maximum IDEA funding limit, which is 40% of the excess cost of educating students with disabilities. In most years the percentage has been between 15-18%. That is why there are bills introduced in every Congress that call for “full funding” of IDEA that get us to the 40% commitment. However, these bills do not get very far. A bi-partisan full funding bill was introduced in the House in June of 2017. You can read details HERE.
Many of the cuts to education would impact key programs under the Every Students Succeeds Act (ESSA). The budget would eliminate Title II teacher training grants, grants for literacy instruction and funding for after-school and summer programs. Also, the Student Support and Enrichment grants that would fund well-rounded education would be cut. See the article about the President’s proposed education budget HERE. These education cuts are just a piece of the budget.
There are also proposed cuts for other programs that impact individuals with disabilities. See this statement by the Autistic Self Advocacy Network for more information click HERE. It is important to keep in mind that Congress does not generally agree to any President’s budget, but this budget puts us on alert for issues that will require advocacy as we move forward.
On a positive note, the President’s budget request includes $11.8 million to continue funding for the Transition Programs for Students with Intellectual Disabilities (model programs) and the National Coordinating Center that evaluates the TPSIDS, provides technical assistance and is developing model accreditation standards.
School District Weighted Funding Pilot Under ESSA
The U.S. Department of Education announced a pilot program which will permit Local Education Agencies (LEAs-also referred to as school districts) to combine eligible federal funds with state and local funds to create a single, “student-centered funding system.” In the context of the pilot, a student-centered funding system is a system based on weights that allocate substantially more funding for students from low-income families, English learners, and other educationally disadvantaged student groups. The Department can approve up to 50 LEAs to participate in this pilot. The deadline for LEAS to apply for the pilot is March 12, 2018. The application document requires each LEA to assure that it developed and will implement the local flexibility demonstration agreement in consultation with teachers, principals, other school leaders (including charter school leaders in an LEA that has charter schools), administrators of Federal programs impacted by the agreement, parents, community leaders, and other relevant stakeholders. It is important for parents to find out whether their LEA is planning to submit an application and, if they are, how parents are being consulted in the development of the “student-centered funding system.”
Endrew F. Wins His Case in District Court!
In the Endrew F. case, the Supreme Court rejected the “slightly more than minimal benefit” standard that had been used by many lower courts to determine whether a Free Appropriate Public Education (FAPE) had been provided. The Supreme Court then sent the case back to the U.S. District Court to be decided using the new description of FAPE it had set forth. NDSC, as well as Stephanie Smith Lee (NDSC Senior Policy Advisor) and Madeleine Will (NDSC Policy Advisory Council member) in their roles as former U.S. Department of Education officials, submitted a brief in the District Court case. This time the District Court found that Endrew F. had not been provided FAPE by the school district! The District Court decision can be found HERE. Two key quotes are below:
“The District’s inability to develop a formal plan or properly address Plaintiff’s behaviors that had clearly disrupted his access to educational progress starting in his second grade year does, under the new standard articulated by the Supreme Court in this case, impact the assessment of whether the educational program it offered to Petitioner was or was not reasonably calculated to enable him to make progress appropriate in light of his circumstances. The District’s inability to properly address Petitioner’s behaviors that, in turn, negatively impacted his ability to make progress on his educational and functional goals, also cuts against the reasonableness of the April 2010 IEP.”
“[Endrew’s] IEP was not appropriately ambitious because it did not give [him] the chance to meet challenging objectives under his particular circumstances. Specifically, the IEP proposed by the District was not reasonably calculated for Petitioner to ‘achieve academic success, attain self-sufficiency, and contribute to society that are substantially equal to the opportunities afforded children without disabilities.’ . . . As such, the District failed to provide Plaintiff with a FAPE.
If you want to learn about using the Endrew F. Supreme Court case at your son or daughter’s IEP meetings, there is a webinar that can be viewed at http://bit.ly/2GfvPya. Also, you can find an Endrew F. toolkit at HERE. This toolkit was designed for students with learning disabilities. In the case of students with significant cognitive disabilities who take alternate assessments, the goal in the first talking point section of the worksheet may not be to meet the grade level standards, but instead to meet challenging objectives aligned with the grade level content standards (see talking point 7).
The National Council on Disability released five new policy briefs on IDEA, including one on the Segregation of Students with Disabilities. You can find these briefs HERE.
The Institute on Educational Leadership released a policy brief on Transition for Students with Disabilities. IEL says “”[t]his policy brief is intended to inform school leaders about their responsibilities under recent case law to prepare youth with disabilities for work and careers. It may also be helpful to students, families, vocational rehabilitation and developmental disability agency personnel, and community rehabilitation providers.” You can read the brief HERE.
Self-Advocate Spotlight: Tony Piontek
Why do you think self advocacy is important?
It’s a way for me to give everyone an opportunity to speak up and it’s a privilege to be their VOICE. It’s important for everyone to have this chance. It is always important to our society to make a difference in this world for all people who have Ds.
What activities/groups are you invloved in?
In 2011, I was elected to the National Down Syndrome Congress Board of Directors. My role as a VOICE continues at the Annual National Down Syndrome Congress Conventions and mid year meetings, on committees and conference calls over the years. I also chose to be on panels and to present my own workshops at the Conventions (speaking to from thirty to one thousand people). I am completing ten years as a Down Syndrome Association of Acadaiana self advocate, been a past Board member and Advisory Board member and Staff member for our Buddy Walk. I am an Eagle Scout since January 11 , ’92 and earned Vigil membership for the Order of the Arrow. I teach at the University of Scouting in the Evangeline Area Council and earned all three degrees Bachelor, Masters and Doctoral to be a Facility member. I am a previous Louisiana State Planning Council for Developmental Disabilities Member 1997 – ’00 Governor-Appointed Board, appointed my by Governor, Murphy J.Foster.
What is your job or your profession?
I’ve been working for two wonderful part -time Cajun style Catering restaurants. I am looking for a full-time job right now.
What are some of your hobbies?
I enjoy blogging, connecting with other DS networks, cycling, tennis, working out, reading the newspaper, sketching, writing a book, and talking with my girlfriend. I am taking classes at the University of Louisiana in Lafayette, LA. I’ve been selected and am in training for the USA Games in Seatle,WA for the sport of tennis.
Where do you live?
For thirty seven years I have lived in New Iberia, Louisiana in the heart of Cajun Country.
What advice would you give to someone interested in becoming invloved in policy-making?
I would say they ought to listen to families, parents and professionals about what the needs are and what’s available or not where they live.
What do you think is the biggest problem policy issue facing the Down syndrome population right now ?
Employment readiness/training and the Waiver list are most important.
New Attacks on Medicaid: Drastic Cuts, Work Requirements and Lifetime Caps
As 2018 begins, the attacks on Medicaid continue with no end in sight. Actions taken by this Congress and Administration will have a tremendous impact on whether people with Down syndrome and other disabilities will have the supports and services needed to have jobs and independent lives for years to come. Below is an analysis of the current situation.
President’s 2019 Budget Request – Cuts to Medicaid and Health Care
With the release of the president’s budget, attacks on the Medicaid Home and Community-Based Services have been revealed. In part, this is happening because of the final tax bill, Tax Cuts and Jobs Act, passed in December 2017, reduces revenue by over $1.4 trillion which Congress has said will be paid for with cuts to Medicaid, Medicare and other important programs often referred to as entitlement reform.
Even though attempts to repeal Medicaid were defeated three times last year, the president’s budget (sent to the Senate and the House of Representatives) calls for drastic cuts in Medicaid funding. The Graham-Cassidy-Heller-Johnson bill, which would convert all Medicaid funding to per capita caps and block grants, is proposed in this budget. This would decimate Medicaid’s Home and Community-Based Services program under which community living and job supports are funded for most people with disabilities.
The language in President Trump’s 2019 budget states:
“The Budget supports a two-part approach to repealing and replacing Obamacare, starting with enactment of legislation modeled closely after the Graham-Cassidy-Heller-Johnson GCHJ) bill as soon as possible, followed by enactment of additional reforms to help set Government healthcare spending on a sustainable fiscal path.” https://www.whitehouse.gov/wp-content/uploads/2018/02/budget-fy2019.pdf.
This is only the first step in the budget process. The House of Representatives and Senate will be working on their respective budgets as well.
Administration Can Cut Medicaid Home and Community-Based Services Without Congress
On January 2018, the Center for Medicaid and Medicare Services (CMS) issued guidance for states in a State Medicaid Director Letter stating that it would support state efforts to design work requirements (referred to as “community engagement”) in Medicaid as a condition to eligibility for Medicaid health services and community supports. This would affect the Medicaid Home and Community Based Services program that funds most community-living and employment supports for adults with Down syndrome and other disabilities and many children.
The guidance describes the potential scope of requirements that could be approved and presents the case for how these policies promote the objectives of the Medicaid program. This action reverses previous Democratic and Republican Administrations, which had not approved such waiver requests on the basis that such provisions would not further the Medicaid program’s purposes of promoting health coverage and access. This allows states to impose new restrictions on Medicaid HCBS spending through the Medicaid waiver process – by applying to CMS.
CMS has already approved work requirement waivers in Kentucky and Indiana, and nearly a dozen other states have already submitted similar requests. Medicaid work requirement proposals would generally require beneficiaries to participate in approved activities, such as employment, job search, or job training programs, for a certain number of hours per week, and certify this participation, in order to receive health coverage.
The guidance permits states to target only people who are “eligible on a basis other than disability.” This means that Medicaid recipients who qualify for the program who are also receiving Supplemental Security Income (SSI), which is solely for people who are significantly disabled, would not be subject to these work requirements. While many people with Down syndrome and other disabilities do take the SSI pathway into the Medicaid program, many qualify for Medicaid through other pathways. Many adults, including some with Down syndrome, are disabled but not certified “disabled” by SSI so would still be subject to these work requirements. While it purports to use the SSI or SSDI standard in determining who is too disabled to work, 57% of non-elderly people with disabilities are not on SSI or SSDI.
The work requirements will also negatively impact many low-income caregivers who are Medicaid recipients. The data shows that people want to work, and many are already working. See here for an issue brief outlining how these Medicaid work requirements may affect adults with disabilities.
The CMS guidance letter specifically states that Medicaid funds cannot be used to aid participants in meeting the work requirements through job training, employment services, or childcare. In fact, CMS recently denied Indiana’s request to use Medicaid funding to help participants meet their work requirement by providing them skills assessment, training and assistance with searching for a job.
NDSC opposes these work requirements and has signed onto a joint letter by the Collaboration to Promote Self-Determination (CPSD) and the Association Promoting Supported Employment (APSE).
In addition to work requirements, at least five states have asked CMS to approve proposals that would put a cap on how long beneficiaries of Medicaid can receive coverage. These proposals, which have not yet been approved, look very different from each other.
For example, Arizona and Utah are seeking a five-year limit on Medicaid coverage, but Utah’s restrictions would only apply to childless adults. In Arizona, time limits would only apply to periods in which Medicaid recipients do not meet work requirements. Maine has put forth a proposal that would impose limits on coverage to three months in any 36-month period, but these limits would only apply if the recipients aren’t meeting the program’s work requirements. In Kansas, Utah and Wisconsin, the proposed time limits would apply even to those people who do meet the work requirements. Imposing these new requirements would mean that any of the federal waivers mean that thousands of people will lose vital coverage. For more information about the proposed time limits, see HERE.
NDSC has vigorously opposed Medicaid cuts since those efforts began in the spring of 2017, and we will continue to do so. These efforts to return Medicaid to a health insurance program only threaten the supports and resources that help people with Down syndrome live and work in their communities. These threats will continue for many years to come. Again, NDSC will keep you updated and let you know when timely action is needed.
Thank you to Susan Goodman for contributing to this article.
Update on the ADA Education & Reform Act (HR 620)
Last week, the House of Representatives voted 225-192 to pass the ADA Education and Reform Act (HR 620) (See how your Representative voted here: http://clerk.house.gov/evs/2018/roll080.xml.) This bill, while intended to curtail frivolous ADA-based lawsuits filed by some unscrupulous attorneys against business owners, will actually undermine protections of the ADA and take away rights of people with disabilities. (See this OpEd from former PA Governor Tom Ridge on how this bill would harm the entire disability community.)
The ADA Education and Reform Act would eliminate the need for businesses and other entities that offer services to the public to meet accessibility requirements until a very detailed complaint is filed against them by the person with a disability whose access is being impeded. An individual with a disability would not be able to file an ADA complaint unless it is in writing, specifies the exact part of the law that is being violated, shows that the person complaining has made a direct complaint to the business, and specifies whether the barrier or lack of access is permanent or temporary. The bill would then require the person with a disability to wait 180 days for the business to “fix” the complaint; therefore denying the person with a disability access to the services for the waiting period. Also, a business could have more than 180 days to fix the complaint if they are making “substantial progress” to fix the complaint.
This bill will impose significant obstacles for people with disabilities to enforce their rights under Title III of the Americans with Disabilities Act (ADA) to access public accommodations, and would impede their ability to engage in daily activities and participate in the mainstream of society. It shifts the blame for frivolous lawsuits from attorneys who are “bad actors” onto the people who are being aggrieved by the failure of businesses to comply with a law that has been on the books for nearly three decades. HERE is more information about the myths and truths of this bill.
NDSC issued several Action Alerts and strongly opposed the passage of this bill, along with hundreds of other disability and civil rights groups across the country (See HERE). Now that the bill has passed the House, we have already begun contacting Senators to urge them not to go down the same path. Watch for updates and new action alerts if this bill comes to the Senate.
EMPOWER Care Act: Money Follows the Person
In December 2017, the bipartisan EMPOWER Care Act (S.2227) was introduced in the Senate by Senators Rob Portman (R-OH) and Maria Cantwell (D-WA). The EMPOWER Care Act would extend and improve the Money Follows the Person (MFP) Demonstration Project for five years. The MFP Project was enacted by President Bush in 2005 with strong bipartisan support. It provides states with enhanced funding to improve access to Home and Community Based services (HCBS) for Medicaid recipients. States have discretion in how to use the funds, which they have used to expand or enhance HCBS programs, reduce waiting lists and fund housing supports. At the end of 2015, more than 43 states and the District of Columbia were participating in the MFP demonstration program.
Medicaid requires states to provide care in nursing homes, but makes home and community-based services (HCBS) optional. Thanks to MFP, over 75 thousand individuals with chronic conditions and disabilities and seniors decided to transition from institutions back into the community through 2015. However, the funding for the MFP program expired in 2016. Without reauthorization by Congress, states will lose access to this funding which helps many people with intellectual and developmental disabilities transition out institutional settings into the community-based care setting of their choice.
NDSC recognizes the importance of Medicaid-funded HCBS to individuals with Down syndrome and their families. We strongly support the EMPOWER Care Act and are asking Senators to cosponsor this bill. For more information, please see HERE.
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