In this edition of Capitol Connection, get updates on the debt ceiling debate and the budget, the State of the Union address, legislation introduced in the new Congress, along with state and federal advocacy resources. Please use our Action Center to urge Members of Congress to support legislation for the Autism community. 


Debt Ceiling Debate and Implications

President Biden met with House Speaker Kevin McCarthy last week to discuss how they could come to an agreement on lifting the debt ceiling (also see January 26th issue of Capitol Connection). House Republicans have insisted they will not allow the debt ceiling to be raised without an agreement to significantly reduce federal government spending. President Biden and Democratic leaders refuse to negotiate over the debt ceiling, saying the place to negotiate revenue and spending priorities is through the regular budget and appropriations process. Biden and McCarthy reported having a good conversation but did not give specific promises.

House Republicans are pushing a plan to cut spending back to FY 2022 levels, which would amount to an approximately $130 billion cut. However, they have not issued a specific plan on how to achieve such cuts. House Republican Committee and Caucus chairs are pushing to create panels to study extending Social Security and Medicare solvency as part of any debt limit deal, although Speaker Kevin McCarthy says that these programs are off the table. 

The Center on Budget and Policy Priorities issued an analysis of the implications of such cuts. It shows different scenarios of achieving such massive cuts and how it might impact non-defense discretionary programs, such as housing, early interventions, education, employment, research, surveillance, and health care. Pluribus News, a state advocacy newsletter, published an analysis of how defaulting on our federal debt could impact state budgets. 


Budget and Appropriations

March 9th is the date President Biden plans to submit his annual budget to Congress, marking the beginning of the FY 2024 budget and appropriations process. Following the President’s budget release, the House plans on developing a budget resolution by April. Disability advocates are very concerned about the debt ceiling negotiations leading to major cuts to Medicaid, other health care, child care, nutrition, education, employment, and other non-defense programs. The Autism Society will be educating Members of Congress about the impact such cuts would have on people with Autism and their families.


State of the Union

On Tuesday, the President laid out his priorities for the year in the annual State of the Union Address to a joint session of Congress. On health care, the president urged Congress to continue expanding subsidies for the Affordable Care Act that were enacted during the COVID public health emergency. He also urged Congress to expand Medicaid coverage to those states that have not taken the opportunity to provide coverage to low-income families under the Affordable Care Act. Regarding the pandemic, he said, although the public health emergency is ending (on May 11th), Congress should continue to monitor new COVID variants, and continue to fund emergency preparedness, therapeutics, and new vaccines. Regarding education, he urged Congress to pass his plan to provide free education to preschool-age children and two years of community college for some students. Directly related to disability policy, he said, “pass my plan so we get seniors and people with disabilities the home care services they need and support the workers who are doing God’s work.” By this, we can assume he is referring to his Build Back Better Plan where he proposed an additional $400 billion for Medicaid home and community-based services (HCBS). The Better Care Better Jobs Act, just reintroduced in Congress, is based on this plan (see article below). Biden also urged Congress not to cut Social Security or Medicare (he did not mention Medicaid in this context). For all the details, you can watch the full address or read the transcript on the White House website.


Better Care Better Jobs Act

On January 26th, Senator Casey (D-PA) re-introduced the Better Care Better Jobs Act (S. 100) in the new Congress, along with 39 co-sponsors. The bill, strongly supported by the Autism Society, is cosponsored by Senators Wyden (D-OR), Duckworth (D-IL), Hassan (D-NH), and Brown (D-OH). The bill increases the Medicaid matching rate by 10 percent for Home and Community-Based Services (HCBS), provides increased pay rates for direct care workers, and makes the Money Follows the Person program permanent. An identical bill was introduced in the House by Rep. Debbie Dingel (D-MI). See a summary of the bill. Use our Action Alert to email your Senator to urge them to support this legislation. 


Health Care

Energy and Commerce Committee Chair, Cathy McMorris Rogers, introduced the Protecting Health Care for All Patients Act (H.R. 485). A hearing was held last week on the bill with speakers from the National Down Syndrome Society and Families USA. This bill bans the use of Quality-Adjusted Life Years (QALYs). QALYs are a measure used to prioritize patient care. They put a lesser value on drugs and treatments that extend the lives of people with disabilities as compared to the lives of people without disabilities or chronic illnesses. The National Council on Disability has frequently cited QALYs as a discriminatory practice in federal policy. The Autism Society wrote a letter in support of the bill. 



Housing Priorities for 118th Congress

The National Low Income Housing Coalition (NLIHC) released Advancing Housing Justice in the 118th Congress, a memo addressed to the new Congress outlining the ongoing need for federal investments in affordable, accessible housing and the long-term solutions required to end the nation’s affordable housing and homelessness crisis. The memorandum makes clear that the severe shortage of safe, decent, affordable, and accessible housing is one of the most critical issues facing America’s lowest-income and most marginalized households – and one that must be squarely on the agenda for every member of Congress. 


Covid-19 Public Health Emergency Ending

House Republicans started the sessions with a few bills related to Covid-19. One bill, HR 382, would immediately end the public health emergency. A second bill would end the Covid-19 national emergency (H J Res 7). The third bill, HR 497, would reverse Covid-19 vaccination mandates for healthcare workers that participate in Medicaid and Medicare programs. The House Rules Committee voted in favor to move these bills forward for consideration. In response to these bills, the Biden Administration announced that the Public Health Emergency will end on May 11th, 2023. The Autism Society Policy Team is working on a memo to help affiliates and advocates understand all provisions that will come to an end with the end of the public health emergency. 



ACL Resources on Direct Care Workforce

The Administration for Community Living has made supporting and strengthening the direct workforce a top priority. They have combined resources on their direct care workforce webpage. Resources include training, grant programs, reports, and other tools. In October 2022, ACL awarded a five-year grant totaling over $6 million to establish a national center to expand and strengthen the direct care workforce across the country. When fully operational, the center will provide technical assistance to states and service providers to address the urgent need for direct support professionals.


Guidance on Adolescence and Hospitalization 

The American Academy of Pediatrics published guidelines to pediatricians on how to care for adolescence when they are hospitalized, with a section on adolescence with intellectual and developmental disabilities. The guidance is in the form of a policy statement and clinical report. The clinical report states that individuals admitted through the emergency department with developmental disabilities such as Autism are four times more likely to have complications compared to those without developmental disabilities. The Academy urges providers to include people with developmental disabilities and intellectual disabilities in their patient plans. 


National Lifespan Respite Conference

Recordings from the 2022 National Lifespan Respite Conference have been released. This conference featured keynote speakers Alison Barkoff Principal Deputy Administrator for the Administration for Community Living; Dr. Jennifer Olsen from the Rosalynn Carter Institute for Caregivers; and Charlotte Deleste who is a News Anchor at Madison WISC-TV, a parent, and founder and vice-president of Gio’s Garden Therapeutic Respite Center. The closing panel was on Supporting Working Caregivers through Employer Engagement. 


Updated ABLE Account Resource

Since the ABLE Age Adjustment Act was passed in December, individuals who obtain their disability up to age 46 will be able to save through an ABLE Account. This law will go into effect on January 1st, 2026. To prepare for this change, the ABLE National Resource Center updated resources including a decision guide, a Q&A, and more. 


State Advocacy

Unwinding and Medicaid Webinar

Congress passed the Consolidated Appropriations Act of 2023 in December to outline a glide path to reduce the federal funding that was given during the Covid-19 pandemic to provide continuous Medicaid coverage. States now have until April 1st to unwind and disenroll individuals. The National Health Law Program is hosting a webinar next week on Tuesday, February 14th at 3 pm EST to help advocates understand unwinding in the States. You can register here

Restraints and Seclusion in Texas

Jacquie Benestante, Executive Director of Autism Society Texas spoke at the Texas State Capitol along with family and disability advocates to demand action to reduce restraints in schools. The legislature has introduced bills that would ban school employees and volunteers from putting students on their backs and ban officers from using handcuffs or chemical restraints on students under the age of 10. Benestante also advocated for Child Protective Services to act as a watchdog over these cases. Texas law currently allows for any restraint in schools only when threat of serious physical harm or property destruction. 


South Carolina Subminimum Wage Ban

Governor Henry McMaster of South Carolina signed into law a bill to end subminimum wages. The bill was passed last year and bans the use of 14(c) waivers to pay people with disabilities subminimum wage. The Law will require and offer support to employers to transition to an employment-first model with a focus on a competitive and integrated setting. As of 2020, 2,900 South Carolinians with disabilities were paid subminimum wages. 


988 Mental Health Hotline

The National Association of State Health Policy is tracking state legislation passed or pending to implement the new 988 three-digit mental health crisis helpline. See what legislation was enacted in your state and how to use this tracker to advocate for a robust implementation.


Education Department Calls for Less Removals

Valerie C. Williams, the Director of the Education Department’s Office of Special Education Programs, wrote a blog post with guidance urging school districts to lessen the number of times they remove students with disabilities from the classroom due to behavioral concerns. This discussion series is being published to bring awareness to the discipline guidance and other technical assistance the department published last year. Williams notes that in the 2019-2020 school year, over one and a half million students with disabilities were removed from their learning environment. She mentioned this data has been pretty consistent over a ten-year period. She said it is critical that schools empower educators with evidence-based strategies to help students navigate behavioral challenges. Williams is also a parent of a student with developmental disabilities.