Policy & Advocacy Newsline ~ February 2022

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Advocacy Effort to Combat Discrimination in Coverage of Alzheimer’s Drugs

In January, the Centers for Medicare & Medicaid (CMS) released a draft proposal relating to a new class of treatments for Alzheimer’s disease.  This proposal stated that FDA-approved drugs in this class would be covered for people with Medicare only if they are enrolled in qualifying clinical trials. However, it specifically excluded from trials participation patients who have “any neurological or other medical condition (other than A.D.) that may significantly contribute to cognitive decline.” People with Down syndrome fall into this exclusion.

People with Down syndrome are at an increased risk of Alzheimer’s disease, which scientists believe results from the extra genes present on the 21st chromosome (which also carries a gene that produces amyloid precursor protein) and other factors such as accelerated aging of the brain.  Since the vast majority of people with Down syndrome rely upon Medicare/Medicaid for health coverage and do not have secondary coverage, they would not be able to afford these potentially life-altering Alzheimer’s medications.  This is blatant discrimination in that these drugs would not be covered for an individual with Down syndrome, even with a doctor’s recommendation,  yet CMS would cover them for people without Down syndrome.

NDSC submitted comments to CMS to oppose this proposal.  Along with Down Syndrome Affiliates in Action (DSAIA), Down Syndrome Medical Interest Group (DSMIG-USA), GiGi’s Playhouse Down Syndrome Achievement Centers, Global Down Syndrome Foundation (Global), LuMind IDSC Foundation (LuMind IDSC), National Down Syndrome Society (NDSS), and National Task Group on Intellectual Disabilities and Dementia Practices (NTG), NDSC catalyzed a community-wide response by urging people to submit comments to CMS on this proposal.  Thanks to our community’s widespread participation, CMS received over 5,000 comments and will now need to begin the arduous task of reviewing and considering each comment before finalizing its proposal.  As CMS reads through our community’s outrage at their discriminatory proposal, we are hopeful that they will reverse course and ensure that their coverage is equitable.

Build Back Better Act Update

Movement on the $1.75 trillion Build Back Better Act, also known as the “reconciliation bill,” which passed the House of Representatives in November 2021, remains stalled in the U.S. Senate.  The Build Back Better Act contains an unprecedented amount of funding for Medicaid Home and Community Based Services (HCBS) ($150 billion over 10 years), as well as a substantial number of other provisions that would greatly benefit people with disabilities and their families.  Additional provisions in the House version of the bill include funding to encourage states to build capacity for competitive integrated employment for people with disabilities, funding for special education teacher training under Part D of IDEA, allocations for affordable housing, and help for families such as paid family leave, nutrition assistance, and tax credits.

We have heard that behind-the-scenes negotiations are still quietly happening between the White House and the Senate.  It is unclear whether the Build Back Better Act will be slimmed down or if individual bills will have to be moved separately.  NDSC joined in a letter in support of Home and Community-Based Services (HCBS) funding to be included in the Build Back Better Act or any package that may be negotiated in the future.  A large investment in HCBS is necessary to build a sustainable HCBS infrastructure that can both increase access to Medicaid HCBS and address the direct care workforce crisis.  NDSC will continue to advocate for funding for HCBS as a top priority.

New Bill to End Waiting Periods for SSDI and Medicare Benefits

On February 3, U.S. Representatives Lloyd Doggett (D-TX) and Brian Fitzpatrick (R-PA), as well as Senator Bob Casey (D-PA), introduced the Stop the Wait Act.   The Stop the Wait Act would end harmful waiting periods during which people with disabilities must wait five months to receive Social Security Disability Insurance cash benefits and an additional two years to receive Medicare benefits. This wait places people with disabilities at serious risk of not accessing health care and facing financial instability.  This legislation would ensure that people with disabilities can immediately access the benefits earned without an unnecessary additional waiting period.  NDSC supports this legislation.

New Guidance for Health Care Providers on Civil Rights Protections for People with Disabilities 

The U.S. Department of Health and Human Services (HHS) has issued new guidance for healthcare providers entitled FAQs for Healthcare Providers during the COVID-19 Public Health Emergency: Federal Civil Rights Protections for Individuals with Disabilities under Section 504 and Section 1557.  The guidance makes clear that “[f]ederal civil rights laws continue to apply during any public health emergency, including COVID-19, and [the Office of Civil Rights] continues to enforce laws prohibiting discrimination on the basis of disability” including Section 504 of the Rehabilitation Act and Section 1557 of the Affordable Care Act.  The guidance also provides clarity on compliance with Section 504 and Section 1557 when a health care provider is operating under a Crisis Standard of Care.  It affirms previous HHS guidance that healthcare entities may not deny services to individuals based on their disability and must make rationing decisions free from stereotypes and biases about disability.

Annual Report to Congress on IDEA Implementation 

The 43rd Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act (IDEA) 2021 was recently released.  The purpose of this report is to describe the nation’s progress in:

  1. providing a free appropriate public education (FAPE) for children with disabilities under IDEA, Part B (ages 3- 21+), and early intervention services to infants and toddlers with disabilities and their families under IDEA, Part C;
  2. ensuring that the rights of these children with disabilities and their parents are protected;
  3. assisting states and localities in providing IDEA services to all children with disabilities; and
  4. assessing the effectiveness of efforts to provide IDEA services to children with disabilities.

The data in these reports are reflective of two years prior.  For example, the LRE data for students with Intellectual Disabilities listed by state in this 2021 report was collected in the fall of 2019.  This information can be found on page 159 of the document and page 193 of the pdf.   Unfortunately, the national percentage of students with intellectual disabilities who are educated 80% or more of the day in the general education classroom has been stagnant for a long time.  In a study of students who take alternate assessments, the percentage is significantly lower at only 3%.

TIES Center Update

The static LRE data described in the Annual Report to Congress for students with Intellectual Disabilities and the disturbing data on students who take an alternate assessment are reasons why the TIES Center on Inclusive practices and Policies for Students with Significant Cognitive Disabilities is so important.  The TIES Center focuses on increasing time in general education classes and on effective instruction, student engagement, and systems reform.  The TIES Center recently added two resources to its website, which include a guide that lists nine evidence-based practices for maximizing inclusive education by supporting meaningful peer relationships and a guide for creating communities of belonging.

[Inclusion & Peer Relations]      [Creating Communities of Belonging]

NDSC Senior Education Policy Advisor Ricki Sabia also serves as the TIES Center parent liaison, where she often co-authors parent briefs.  Two upcoming parent briefs will include discussions on inclusion myths and accessing communication supports.  Educators can also find essential resources on the TIES website.

Secretary of Education Cardona’s Speech on Investments in Education 

In an address delivered on January 27, Secretary of Education Miguel Cardona laid out his vision for continued recovery through the pandemic and his priorities for broader investments in America’s education system to ensure all students can succeed and thrive.  The Secretary stated, “Our task is not only to improve our education system from where it was before the pandemic but also to take bolder action to elevate it to lead the world.” One specific point in the speech addressed the need to increase funding for IDEA.  NDSC has joined with a number of coalitions to advocate for increased early childhood and school-age funding for IDEA as well as funding for other important services such as assistive technology and teacher preparation.

View the video of Secretary Cardona’s Speech

Read More

Article on Modifications and Accommodations

NDSC’s Ricki Sabia was quoted in an article that explains the difference between accommodations and modifications and discusses the provisions in federal law that address whether modifications should impact educational setting, diploma, and assessment. https://community.undivided.io/news/157100

Higher Education 

Increasing Pell Grant Awards
Each year, more than seven million low and middle-income students — including nearly 60% of Black undergraduates and almost 50% of Latino undergraduates use Pell Grants to attend and complete college.  In addition, students with intellectual disability enrolled in a comprehensive postsecondary program approved by the U.S. Department of Education may qualify for Pell Grants.

Nearly 50 years ago, the maximum grant covered more than three-quarters of the cost of attending a four-year public college.  Pell Grants now cover less than one-third of those costs.   NDSC joined with 186 other organizations to send a letter to Congressional leadership urging that the maximum award for Pell Grants be doubled in any funding bills, including the Fiscal Year 2022 appropriations bill.

Vocational Rehabilitation Support for Inclusive Higher Education
NDSC policy team members recently participated in a Collaboration to Promote Self-Determination meeting with the leadership of the U.S. Department of Education, Office of Special Education and Rehabilitative Services (OSERS).  One of the issues discussed is the inconsistent usage of vocational rehabilitation (V.R.) funds to support postsecondary students with I.D.  As a result of advocacy led by NDSC, in 2019, OSERS released guidance confirming that V.R. funds may be used for these students.  However, this guidance does not seem to be trickling down to the local level.  Prior to the meeting, NDSC received nearly 100 responses from 17 states to an informal survey conducted on social media of parents of students in inclusive postsecondary education programs.  The responses were primarily negative and overwhelmingly showed inconsistencies among and within states.  Parents shard that supports and funding may be consistent in availability from state to state.  We also discovered that funding may be individualized for some students, but amounts are set for others.  In addition, V.R. counselors have different interpretations about what may be allowed or desirable.  The survey results were discussed with OSERS leadership, resulting in planned follow-up actions.