Policy & Advocacy Newsline ~ January 2021

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The Biden Administration Begins

On January 20, 2021, President Joe Biden and Vice President Kamala Harris will be inaugurated, marking the official beginning of the Biden Administration. The Biden Transition Team has been preparing for months, putting forth a comprehensive list of nominees for key cabinet and appointee posts, some of whom now need to be confirmed by the Senate in order to officially begin working. NDSC has been engaged with some of the Biden transition teams to help set policy priorities and plan for the Administration change. Last summer, the Biden team released the Biden Plan for Full Participation and Equality for People with Disabilities. This disability plan included such goals as boosting Supplemental Security Income (SSI) benefits, fully funding the Individuals with Disabilities Education Act (IDEA), phasing out subminimum wage, and increasing support for direct care providers as well as family caregivers. We are optimistic that the Biden Administration will accomplish many of the goals outlined in this plan.

To see the full inauguration schedule and ways to watch from home, visit the Biden Inaugural Committee website.

The 117th Congress Begins

January 2021 also marks the beginning of the 117th Congress. Democrats have retained control of the House of Representatives with 222 seats compared to the 211 Republican seats (note there are two vacancies). In the Senate, the Democrats have gained the majority following the wins of two Democratic candidates, Raphael Warnock and Jon Ossoff, in the January 5th   Senate runoff elections in Georgia. The 50-50 party split in the Senate means that Vice President Harris, serving in her capacity as President of the Senate, provides the tiebreaker for a Democratic majority. The majority party decides leaders, committee assignments for members, and the schedule to introduce and vote on legislation.

Now would be a great time for you to reach out to your legislators (both US Senators and Representatives, as well as state and local officials) to introduce yourself and your family, discuss what issues are important to you, and start building relationships. For tips on how to do this, see the Association of University Centers of Disabilities’ plain language guide, Contacting Congress, for information on how to contact lawmakers.

Recent & Upcoming COVID-19 Relief Legislation

In late December 2020, the 116th  Congress passed, and President Trump signed into law the Consolidated Appropriations Act, which includes both general government funding for the Fiscal Year 2021 and COVID-19 relief provisions. We were disappointed that the COVID-19 relief provisions in this bill did not include dedicated funding for home and community-based services (HCBS), nor did its additional stimulus checks include adults with disabilities who qualify as dependents. However, the government funding portion of the bill did extend the Money Follows the Person (MFP) program for three years, for which NDSC has been advocating with our disability coalition partners. For more information on this bill, check out this fact sheet prepared by the Center for Public Representation.

The Biden-Harris administration recently released its own new COVID-19 relief proposal, the American Rescue Plan. While this plan did not contain funding for HCBS, it would expand eligibility for the stimulus payments to adult children claimed as dependents on their parents’ tax returns, and it contains other provisions that would be positive for the disability community. Congress is currently in discussions about a new COVID-19 relief package. NDSC will continue to advocate for priorities such as dedicated funding for HCBS and increased funding for education and IDEA implementation and other benefits to support individuals with disabilities and their caregivers during the pandemic.

COVID-19 Vaccine Distribution

NDSC has been advocating for all people with intellectual and developmental disabilities (IDD), their caregivers, and support personnel to be given priority in vaccine allocation and ensure that vaccine allocation is done in an equitable, accessible way.  According to a recent Science Magazine report,  people with Down syndrome are ten times more likely to die from complications from COVID-19, and people with IDD have been disproportionately impacted in many other ways.

The Centers for Disease Control and Prevention (CDC) has issued guidelines for distributing the vaccine and have recently included Down syndrome in its list of underlying medical conditions that pose an increased risk of COVID-19. Each state, though, is responsible for developing individual plans. A compilation of all state plans can be found on the Council of State Governments website.  Many state plans are still being finalized, so we advise you to reach out to your Governor’s office and state Department of Health to urge them to give people with Down syndrome and IDD priority in vaccine distribution. Advocacy efforts by Down syndrome groups across the country have been proving successful, and states such as Connecticut and Missouri have recently placed people with Down syndrome into a higher priority phase for vaccine allocation as a result of these efforts. We encourage you to reach out to your state public health officials to share information about the impact of COVID-19 on people with Down syndrome and the need for this population to receive priority in vaccinations.

President-elect Biden has laid out his plan to confront the challenge of vaccination distribution. His plan will require the full support of the federal government, local communities, and society as a whole, is detailed in a FACT SHEET: President-elect Biden Outlines COVID-19 Vaccination Plan.

Medicaid Block Grant Approved for Tennessee

On January 8, 2021, the Centers for Medicare & Medicaid Services (CMS) approved the first-ever Medicaid block grant waiver allowing Tennessee to turn its Medicaid program, TennCare, into a modified block grant, called an “aggregate cap.” The Tennessee legislature quickly approved this Section 1115 Medicaid waiver and the Governor of Tennessee signed it into law on January 15.

More about TennCare block grant 

Typically, federal funding from Medicaid is open-ended and rises with higher enrollment and health costs, but this agreement will place a federal spending cap on TennCare. Proponents of this program argued that it would give the state unprecedented flexibility to decide who is covered and what services will be paid for so funds will be used more efficiently.  NDSC and other advocates are extremely concerned that this change will threaten access to health care and encourage other states to place similar limitations on Medicaid. It remains to be seen whether the new CMS under the Biden Administration will take steps to reverse this block grant program or halt its implementation in other states.

NDAC Group Member Spotlight: Down Syndrome Association of Central Ohio

We spoke with Kari Jones, President and CEO of DSACO, about how she championed her state to ensure people with Down syndrome were prioritized for the COVID-19 vaccine. She outlines below how strong advocacy ensured that people with Down syndrome were placed at the forefront of vaccine allocation within Ohio.

We asked Kari about her first steps in advocating for people with DS to be prioritized, who she contacted, what information she provided them, and if she was met with resistance.

She told us that “from the beginning of this pandemic, it has been clear to us that Ohio Governor, Mike DeWine, is an ally. He and his office has worked closely with the Ohio Department of Developmental Disabilities (DODD) and Director Jeff Davis to address other concerns related to the pandemic, so when early discussions began around priorities, I think it’s important to recognize that this particular subset was—in some ways—already on his radar.

With that said, the initial priority (beyond front-line emergency personnel) revolved around people living in “congregate settings”. We agreed with that priority but began to worry about adults with Down syndrome who do NOT live in congregate settings and where they would land in the vaccination prioritization. When research came out in October regarding the increased severity of COVID-19 among adults with Down syndrome, we decided to utilize the research as a talking point. We worked to get the articles highlighting this data in the hands of anyone and everyone we could; leaders at DODD, anyone we could within the Governor’s Office, and anyone we could within the Ohio Department of Health. Additionally, we asked DODD for any statistics they had with regard to the estimated number of adults with Down syndrome living in Ohio—something that proved extremely helpful as we forged ahead in our advocacy. It should be noted that—around this same time– DSACO was also actively engaged in meetings with Disability Rights Ohio, a non-profit leader here in Ohio who drafted a letter in which Down syndrome was recommended to be prioritized. We wanted to be sure we were pursuing every avenue possible, so it was really one time where it felt like any duplication of efforts was not a bad thing! At one point, we received a call from the Governor’s Office and they essentially said, “We hear you. People with Down syndrome have been discussed in multiple conversations we’ve had as it relates to vaccine prioritization. It is on our radar.” It felt like the first time I could exhale (but also laugh a little?) because it felt like the equivalent of “OKAYYYYYY… we HEAR you. You can stop now!”, which felt like we were “doing it right” in this instance.

While in most cases advocacy should be built upon over time with a measured approach, this issue was so urgent and time-strapped that we were happy with the fact we got to a level in which we were confident we were being heard. That’s really the best you can hope for in advocacy. It’s not always that your particular “ask” is going to go your way, but you want people to hear you and understand why you’re asking for it. That definitely happened in this instance, and it was really the perfect scenario in that it became a win for Ohioans with Down syndrome.

It was never overtly said, but we also tried to leverage the fact that the population we were aiming to include in the priority was a small number. There are roughly 5,000 adults with Down syndrome in Ohio, so unlike some of the other defined groups (those over 65, teachers, etc.), the group in which we are advocating is somewhat small. In many instances advocacy within the Down syndrome community can be challenging because of our small numbers, but I would encourage advocates in other states to consider leveraging the numbers for vaccine prioritization. For once it feels like smaller numbers can work to our favor!”

We also asked how long the process took and what were the speedbumps?

She replied, “We began the initial information-sharing and advocacy in October, but it really picked up momentum in November. While we didn’t have any speedbumps, I think patience and applying pressure on the decision-makers is definitely a challenge to navigate. We learned of the Governor DeWine’s determination on the priority of including adults with Down syndrome in Ohio’s “1B” group when it was announced during Governor’s press conference on December 23, 2020. We are really proud and grateful for the Ohio leadership who worked to make this decision. It wasn’t until a week later that the CDC officially included Down syndrome as a recommended priority, so it made the decision even more momentous for us here in Ohio.

The announcement was made during a press conference that was later followed up with a Tweet and a press release. Living in a world in which social media moves faster than any other channel, that was the quickest way we were all able to share the good news. Beyond the sheer excitement and gratitude, I think families just want to know the logistics and next steps. We’re thrilled that—by the end of the month—adults with Down syndrome will have access to their first round of vaccinations here in Ohio.”

Congratulations to DSACO for their strong advocacy efforts! Ohio was the first state to prioritize people with Down syndrome in vaccine allocation schedules publicly.

Meeting with President-Elect Biden’s Nominee for Secretary of Education

Dr. Miguel Cardona, President-elect Biden’s nominee for Secretary of Education, held a stakeholder meeting On January 12 with leaders in the disability community. NDSC’s Senior Policy Advisor, Stephanie Smith Lee, was pleased to have been included in this important opportunity to hear from Dr. Cardona and participate in the session.  Dr. Cardona started the session by describing his background as a teacher, principal, and state education leader. He discussed his work to expand services to students with disabilities as a principal and the importance of ensuring that schools are an inclusive environment academically, socially, and emotionally. During the session, disability advocates raised important issues regarding educating students during the COVID-19 pandemic and compensatory education afterward, postsecondary education, and high standards for students with intellectual disability. Also discussed was expanding the use of universal design for learning principles, addressing disproportionality racial and ethnic disparity in school discipline, passing seclusion and restraint legislation, retaining competitive integrated employment rules, and eliminating subminimum wages. Dr. Cardona closed the session with remarks about the need to build the capacity of teachers and systems to educate all students, and expressing commitment, if confirmed, to work with the entire Biden-Harris administration to create a culture of inclusivity. NDSC is encouraged by this outreach to the disability community and we look forward to working with Dr. Cardona if he is confirmed.

State and Local Advocacy for COVID-19 Education Funding

Despite the advocacy of disability groups, including NDSC, the latest COVID-19 relief bill did not dedicate any funding to the Individuals with Disabilities Education Act (IDEA). However, COVID-19 education funding can be used by the states and local education agencies for activities that affect students with disabilities. State advocates should encourage their Governor, State Board of Education, and local education agencies to use COVID education funds to ensure the educational needs of students with disabilities are met via the authorized uses in the bill. An advocacy document on this topic was developed by NDSC and the Advocacy Institute and is available at https://www.ndsccenter.org/wp-content/uploads/2021-Advocacy-Info-on-COVID-19-Education-Funds.pdf

President-Elect Joe Biden’s Fact Sheet on COVID-19 Rescue Package

On January 14, President-elect Biden unveiled the details of a $1.9 trillion coronavirus rescue package, which includes $170 billion for K-12 and higher education. In his speech, he acknowledged that school closures have disproportionately impacted Black and Hispanic students’ learning, as well as students with disabilities and English language learners. The additional funding is aimed at helping schools serve all students and to achieve President-elect Biden’s goal to re-open the majority of K-8 schools within the first 100 days of his Administration.

Relief Package Fact Sheet

42nd Report to Congress on the Implementation of IDEA

The 2020 Report to Congress was just released. One exhibit of particular interest, which can be found on page 56 of the report, Percentage of students ages 6 through 21 served under IDEA, Part B, within disability categories, by educational environment: Fall 2018, shows that on average across the country, only 17% of students with intellectual disabilities are included in general education classrooms 80% or more of the day, whereas 64% of students in the “all disabilities” category are in an inclusive setting. We also know from other studies that the percentage is far lower for students who take an alternate assessment.  The report is based on 2018 data, and much of the findings have not improved over many previous years.  These types of statistics are why NDSC  supports and assists in the important work of the TIES Center on Inclusive Practices and Policies for Students with Significant Cognitive Disabilities. For more information, visit the TIES Center’s website where you can also register to receive the TIES newsletter.