In this issue of Capitol Connection, an update on Congressional action regarding the debt ceiling and new legislation is provided. In addition, find some highlights from the Disability Policy Seminar and Autism Acceptance Month. New alerts and sample letters are now posted on our Action Center to help educate Members of Congress on legislation introduced in Congress. 

Debt Ceiling Bill

The House of Representatives narrowly passed a bill called the Limit, Save, Grow Act on April 26th. The bill aims to raise the government’s debt ceiling for one year in exchange for significant cuts to programs important to people with Autism that would be locked in place for the next decade. This includes work requirements for Medicaid that could result in millions losing access. The work requirements apply to all Medicaid pathways, including for those on Supplemental Security Income (SSI) and home and community-based services (HCBS) waivers. People with disabilities would need a doctor or other medical professional to deem them “physically or mentally unfit for employment” to be exempt from the work rules.

The Autism Society issued a statement following the House vote urging Congress to lift the debt ceiling and negotiate the country’s spending priorities through the regular budget and appropriations process. Thanks to those who contacted their Representatives to educate them about the impact of these cuts. Please use the updated Action Alert to educate Senators so that this bill is never signed into law.

To help advocates understand current threats to Medicaid and other disability programs, the Consortium for Constituents with Disabilities created a special resource page on Protecting Medicaid and Essential Programs. Resources include fact sheets on proposed work requirements and Medicaid cuts. In addition, CCD updated its resource page related to the Public Health Emergency wind-down. 

Disability Policy Seminar

Tracey Staley, Autism Society of America’s Board Chair introduces Senator Casey

Autism Society of Northern Virginia poses with Senator Kaine

The Autism Society co-sponsored the annual Disability Policy Seminar last week. Approximately 300 people participated in the virtual training on Monday followed by Capitol Hill visits on Thursday. Ten Members of Congress 

participated in the Capitol Hill breakfast to greet and speak with participants. They were Senators Casey (D-PA), Kaine (D-VA), Wyden (D-OR), Hassan (D-NH), Murphy (D-CT), and Representatives Beyer (D-VA), Molinaro (R-NY), Bonamici (D-OR), and Wright (R-TX). For those unable to join, the Autism Society will be creating a toolkit to help affiliates make their Hill visit virtually or in their home districts.

New Legislation 

Direct Support Workforce Bills

On April 26th, Senator Kaine (D-VA) reintroduced the Supporting Our Direct Care Workforce and Family Caregivers Act (S. 1298), a bill that would authorize grants through the Administration for Community Living to support the recruitment, training, and retention of direct care workers and family caregivers. Co-sponsors of the bill are Senators Bob Casey (D-PA, Kirsten Gillibrand (D-NY), Maggie Hassan (D-NH), Jack Reed (D-RI), Tina Smith (D-MN), Sheldon Whitehouse (D-RI), and Ron Wyden (D-OR).

On April 27th, Senators Hassan and Susan Collins (R-ME) and Representatives Brian Fitzpatrick (R-PA) and Joe Morelle (D-NY) introduced the Recognizing the Role of Direct Support Professionals Act (S. 1332/ H.R. 2941), a bill that would require the creation of a standard occupational classification for direct support professionals.

Autism Family Caregivers Act

On April 27th, World Autism Day, Representatives Grace Meng (D-NY), Brian Fitzpatrick (R-PA.), Henry Cuellar (D-TX), and Marc Molinaro (R-NY) reintroduced the bipartisan Autism Family Caregivers Act. An identical bill was introduced in the Senate by Senators Bob Menendez (D-NJ) and Susan Collins (D-ME). The legislation authorizes the establishment of a five-year pilot program to award grants to nonprofit organizations, community health centers, hospital systems, or a consortium, to provide evidence-based caregiver skills training to family caregivers of children with Autism and other developmental disabilities or delays.

Administration Updates

Caregiving Executive Order

President Biden singing the Executive Order with Disability Advocates

On April 18th, the Autism Society of America joined President Joe Biden at the White House as he signed an Executive Order to improve care for working families and support professionals caring for individuals with disabilities. The Executive Order directs the Department of Health and Human Services to issue several regulations and guidance documents to improve the quality of direct support professionals (DSP). This includes leveraging Medicaid funding to ensure there are enough home care workers to provide care to people with disabilities enrolled in Medicaid; test new models of respite care; target its grants to provide accessible, affordable child care; and taking steps to increase the pay and benefits for Head Start teachers and staff, among other actions.

Proposed “Access Rule” to Improve Medicaid Services
The Centers for Medicare & Medicaid Services (CMS) working with the Administration for Community Living (ACL), published a proposed rule, Ensuring Access to Medicaid Services (Access Rule) to improve access to — and quality of — Medicaid services and promote health equity across the Medicaid program. The proposed rule applies to all Medicaid services, including home and community-based services (HCBS). The Autism Society will be submitting comments. Comments must be received by July 3rd, 2023. The proposed rule strengthens many aspects of Medicaid HCBS, including the direct care workforce, health, and safety protections. This action is related to the President’s executive order on caregiving and services mentioned in the previous article.

IDEA Annual Report  

The United States Department of Education released its 44th annual report on the implementation of the Individuals with Disabilities Education Act (IDEA). This report is required annually by Congress for the Department to inform them of the progress being made to implement IDEA. The report includes state-by-state data on individuals served under IDEA, their characteristics, settings, exits, disciplinary removals, and legal disputes. The report found that students with Autism served under IDEA have slightly increased for every age group. To find specific data on your state, look through section 2 on page 83. 

Office on Civil Rights Annual Report

On May 1st, the Department of Education’s Office on Civil Rights (OCR) published its annual report for FY 2022. OCR’s mission is to ensure equal access to education and to promote educational excellence across the nation through the vigorous enforcement of civil rights laws. Among its findings in FY 2022, OCR resolved the second highest number of investigations in its history – 16,515 cases—while processing the highest volume of complaints in our history – 18,804 complaints; initiated an unprecedented and targeted 100 proactive compliance reviews; published 7 sets of resources and guidance addressing sex discrimination and disability rights; provided 186 technical assistance presentations; responded to 633 inquiries and 826 FOIA requests; collected civil rights data with a 100% reporting rate from required submitters; revised the Complaint Processing Manual to clarify its processes and added a new tool to help manage the caseload and meet complainants’ and recipients’ interest in efficient resolution.

CDC Expands the ADDM Network 

The Centers for Disease Control and Prevention (CDC) announced in March that the Autism and Developmental Disabilities Monitoring (ADDM) Network, which tracks the number and characteristics of children with Autism, is expanding. The funding to support the expansion comes from the Fiscal Year 2023 Appropriations. Five new sites will become a part of the network, including sites in Arizona, Indiana, Pennsylvania, Austin Texas, and Laredo Texas. In addition, four existing sites will expand to track transition planning and co-occurring conditions among 16-year-olds with Autism. For more information, visit the CDC ADDM website. 

President’s Committee on IDD

On May 1st, the President’s Committee on Intellectual and Developmental Disabilities (PCIDD) held its first meeting of the year. The Autism Society attended virtually. During the meeting, the committee heard back from workgroups related to the direct workforce crisis and community-based services, employment, emergency management, and other federal support programs. Self-advocate committee members provided compelling testimony on the unmet needs of those with IDD. PCPID is an advisory body that promotes policies and initiatives that support independence and lifelong community inclusion. 

Autism Acceptance Month 

Kris Steinetz from the Autism Society of Iowa poses with Governor Kim Reynolds

President Biden declared April 2nd as World Autism Awareness Day. In his proclamation, he calls for more support for community living and employment for those with Autism in America, along with bringing more awareness to help with early identification. The President also mentioned Kevin and Avonte’s Law which was reauthorized last year. Many Governors across the country also proclaimed April as Autism Acceptance Month.  

Kris Steinmetz from the Autism Society of Iowa had a proclamation signing with Iowa Governor Kim Reynolds to declare April as Autism Acceptance Month. In addition, 13 other Governors and two districts/territories declared April as Autism Acceptance Month. Thanks to those state advocates who helped to make this happen 

The post Capitol Connection: May 4, 2023 appeared first on Autism Society.

In this issue of Capitol Connection, find a final notice to register for the Disability Policy Seminar, news about the first-ever sensory-friendly White House Easter Egg Roll, newly introduced legislation, and important congressional hearings, and new resources to help state advocates. New alerts and sample letters are now posted on our Action Center to help educate Members of Congress regarding legislation introduced in Congress. 

 You can still register for the 2023 Disability Policy Seminar. The virtual training takes place on April 24th. Topics include federal funding, community living, health and family supports, education, employment, and housing. If you register, you can also view the recording later. In-person or virtual Hill visits are scheduled for April 27th; however, visits with your Members of Congress can also be scheduled via Zoom or when they are back in their districts at any time. Please use the fact sheets and our Action Center for issue ideas and talking points. 

White House Sensory Friendly Easter Egg Roll 

The Autism Society was able to invite two dozen families from the Washington D.C. area to participate in the first-ever sensory-friendly hour at the annual White House Easter Egg Roll. The special event allowed children with disabilities to enjoy the festivities without the worry of sensory overload. Families enjoyed the shorter lines and reduced noise while they hunted for easter eggs, and rolled eggs down the South Lawn, among other activities.

International Children with Disabilities Protection Act

On March 16th, Senators Menendez (D-NJ) and Moran (R-KS) re-introduced the International Children with Disabilities Protection Act. The bipartisan effort would authorize $10 million annually for five years for an ‘‘International Children with Disabilities Protection Program,” a State Department grant program that would empower organizations advocating for persons with disabilities. The legislation creates a program focused on helping global efforts to combat stigma and discrimination against children with disabilities. It also protects and promotes the development of laws and policies that support the full inclusion of children with disabilities.

Guardianship Bill of Rights Act

On March 30th, Senators Casey (D-PA), Fetterman (D-PA), Warren (D-MA), and Sanders (I-VT) introduced the Guardianship Bill of Rights Act (S. 1148). The bill establishes a Guardianship and Other Protective Arrangements and Supported Decision-Making Council that would be responsible for promoting less restrictive arrangements for people living under or being considered for guardianships. The bill also creates a protection and advocacy agency focused on the rights of people being considered for and living under guardianship. The Senate Special Committee on Aging hosted a hearing to highlight the need for this bill. The hearing can be viewed here. 

Bill to Protect People with Disabilities During Natural Disasters

On March 29th, Senator Casey (D-PA) and Representative Dingell (D-MI-6) introduced the Real Emergency Access for Aging and Disability Inclusion (REAADI) for Disasters Act (S.1049 / H.R. 2371). The READDI for Disaster Act will ensure “there is a strong disability and older adult voice in the preparation, response, recovery, and mitigation of disasters.” Specifically, the REAADI for Disasters Act will establish a National Commission on Disability Rights and Disasters to address the needs of these communities when it comes to disaster preparedness plans; create a national network of centers focused on training, technical assistance, and research, to assist states and territories to better involve and support people with disabilities and older adults; direct the U.S. Department of Justice to review the spending of disaster funds by federal agencies and states; create a competitive grant program to pilot strategies for greater inclusion of people with disabilities and older adults in disaster preparation, response, recovery, and mitigation; and more.

Food Assistance

Rep. Dusty Johnson (R-SD) introduced the America Works Act, a bill to amend the Food and Nutrition Act of 2008 to standardize work requirements for able-bodied adults enrolled in the Supplemental Nutrition Assistance Program (SNAP). Work requirements for SNAP beneficiaries can have harmful effects. These requirements can result in coverage loss due to red tape and administrative burdens. Many beneficiaries may not know about the work requirement or whether it applies to them. Taking coverage away from people not meeting work requirements increases financial hardship and reduces access to food. This can have disastrous consequences for the health and well-being of SNAP beneficiaries and their children. The Center on Budget and Public Policies (CBPP) developed an issue brief for policymakers and advocates. 

Senate Aging Committee on Home and Community-Based Services

The Senate Special Committee held a hearing entitled “Uplifting Families, Workers, and Older Adults: Supporting Communities of Care”. This hearing focused on the critical need for more direct support workers to support home and community-based services. In his opening statement, Chairman Bob Casey discussed how two bills he introduced would help. He said, “The Better Care Better Jobs Act and the HCBS Access Act are complementary. The first one is an investment to create a robust HCBS provider infrastructure for the recruitment and retention of workers. The second bill establishes a permanent funding stream to keep the infrastructure strong and make sure we’re able to continue to pay direct care professionals at a rate that ensures qualified, reliable services and a qualified, reliable workforce into the future.” Witnesses emphasized the growing need for more support workers, testifying that in this decade, a million more new workers will be needed to support the community. In addition, 60 percent of support workers of people with intellectual and developmental disabilities are over the age of 60 years old. The witnesses cited reasons for this crisis to include low wages, high turnover, lack of movement in the field, and Medicaid reimbursement rates. Use the Autism Society Action Center to educate your Members of Congress about these and other bills that support people with Autism.

Hiring and Employment Hearing

The House Committee on Education and the Workforce hosted a hearing entitled “Unleashing America’s Opportunities for Hiring and Employment.” This hearing mostly focused on labor unions, expanding apprenticeship programs and pell grant programs, and reauthorizing the Workforce Innovation and Opportunity Act (WIOA). The Autism Society signed on to a Collaboration to Promote Self-Determination (CPSD) letter to the committee stressing the importance of increasing competitive employment opportunities for individuals with disabilities. 

Pediatric Training

The Accreditation Council for Graduate Medical Education (ACGME), which acts as the governing body of all U.S. medical residency training programs, has proposed a change to their practices to no longer require Developmental-Behavioral Pediatricians to be on the faculty of pediatric residency programs. This proposal would have a significant negative impact on educating residents on how to provide healthcare to children with intellectual and developmental disabilities. The Autism Society of America submitted comments urging ACGME not to waive these requirements. Several affiliates also submitted comments.  

Education

RISE Act

The Respond, Innovate, Succeed, and Empower (RISE) Act was reintroduced in the current Congress by Senators Cassidy (R-LA), Hassan (D-NH), and Todd (R-IN), and Representatives Bonamici (D-OR) and McMorris Rodgers (R-WA). The  RISE Act helps students with disabilities transition to and succeed in college by requiring colleges to accept a student’s IEP, 504 plan, or prior evaluation as sufficient proof of their disability when seeking accommodations, making information about disability services in college more accessible for families and students, and supporting a technical assistance center for college faculty to learn more about the needs of students with disabilities. Please use our action alert to urge your Members of Congress to support this bill to make higher education more accessible. 

Discipline in Schools

In a “Dear Colleague” letter to governors and school leaders, the Secretary of Education Miguel Cardona said that educators should move away from “paddling, spanking or otherwise imposing physical punishment on students.” The use of corporal punishment has declined but still disproportionately impacts students of color and students with disabilities. Twenty-three states still legally allow corporal punishment. The Secretary urges schools to not engage in this practice regardless of whether their state allows it and to instead practice evidence-based strategies, including positive behavioral interventions and supports (PBIS) and multi-tiered systems of support (MTSS). 

Resources

Unwinding of Continuous Enrollment 

The Kaiser Family Foundation (KFF) released a report on the progress and actions states are taking as they unwind the continuous enrollment provisions of Medicaid and CHIP. The report identified 10 key steps states can take as they work through re-enrollment such as taking the entire 12 months to complete the process, improving the amount of renewals without needing enrollee support (ex parte), publishing data on the state website, contacting enrollees when mail is returned, etc. The report has key data on what actions states are taking to ensure an equitable process. KFF also hosted a webinar on the topic where they presented key findings from the report and held a panel discussion with state experts to answer questions. 

The Consortium for Constituents with Disabilities (CCD) sent a letter to the Centers for Medicare and Medicaid Services (CMS) asking CMS to make states’ Renewal Plans public as many states do not have up-to-date information available to the public.  

Self-Determination/HCBS Settings Rule

The Home and Community-Based Services (HCBS) Settings Rule went into effect one month ago. It is important that advocates are aware of the rule and the rights to which individuals are entitled. The Autistic Self Advocacy Network updated its easy-to-read and plain language toolkit to help advocates develop their person-centered planning and advocate for their rights. In addition, the Autism Society led a workshop with the National Association of Councils on Developmental Disabilities, entitled “Creating Community” (a recording will soon be available), and developed a checklist to help advocates ensure their service provider is following the new rule. 

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This special issue of Capitol Connection is dedicated to the President’s Budget proposal for Fiscal Year 2024 and how it impacts Autism services and programs. In addition, registration information for the Disability Policy Seminar is now available and resources on the HCBS Rule that recently took effect. Also, new legislation to strengthen the disability services system was introduced. Alerts and sample letters are now posted on our Action Center to help educate Members of Congress regarding legislation introduced in the new Congress. 

Disability Policy Seminar

The Disability Policy Seminar’s registration has opened! The event will include a virtual training day on Monday, April 24, and a fly-in/or virtual Hill Day on Thursday, April 27. The training day will provide a briefing on current legislative issues including the current budget debates and its impact on Medicaid and disability program funding. It will also cover current legislation impacting education and employment, community living, criminal legal, Autism services, and health and family support. Participants will hear directly from Members of Congress and their staff. The planning team is seeking State Captains who help organize their states meetings with Members of Congress. If you are interested in volunteering, contact Delancy Allred at dallred@autism-society.org.

Home and Community-Based Services (HCBS) Settings Rule

March 17th marked the end of the transition period for the implementation of the HCBS Settings Rule. The HCBS Settings rule was created to ensure that every person receiving Medicaid-funded HCBS has full access to the benefits of community living. To celebrate this, the Centers for Medicare & Medicaid Services (CMS) and the Administration for Community Living (ACL) released a statement and updated the Rule webpage to ensure access to key information on the rule. Watch for information on a webinar for Autism Society affiliates coming up in April. 

HCBS Legislation

Senator Bob Casey (D-PA has introduced two bills to help build the HCBS system including the HCBS Access Act and the Better Care Better Jobs Act. The Consortium for Constituents with Disabilities Long-Term Services and Supports Task Force submitted testimony in favor of these bills to strengthen the direct care workforce and to build capacity in the services system. 

Supreme Court Special Education Decision 

The United States Supreme Court unanimously decided in favor of Mr. Perez in the case of Perez v. Sturgis Public Schools. This decision states that individuals who entered a settlement resolving their Individuals with Disabilities Education Act (IDEA) claims can also pursue monetary damages against school districts under other civil rights laws without having to exhaust the extensive administrative process under IDEA. Read more here.

Administration FY 24 Budget Analysis

President Biden submitted his budget request to Congress on March 9th. The Autism Society is pleased to see a number of significant increases dedicated to programs and services important to people with Autism and other disabilities. This includes $150 billion dedicated to home and community-based services, which is intended to build upon the American Rescue Plan funding that has helped support our services system during these difficult times. The budget also requests the restoration of the expanded Child Tax Credit, which cut child poverty in half in 2021. The proposal also called on Congress to make the Earned Income Tax Credit expansion permanent, which provides tax relief to many low-wage workers with disabilities.

Below is a table comparing the previous year’s funding levels with the President’s FY 24 funding request for discretionary funding of programs within the Departments of Labor, Health and Human Services, and Education. This is followed by a summary analysis of the President’s budget.

Department of Health and Human Services

DD Act Programs

For the Developmental Disability Act programs, the budget includes $46 million, an increase of $3 million, for University Centers for Excellence in Developmental Disabilities and $82 million, an increase of $1 million, for State Councils on Developmental Disabilities, and a $15 million increase for the Protection and Advocacy Systems, also known as the disability rights network. The President also includes a $4 million increase for Projects of National Significance. The request includes $1.25 million to continue the operation of the Disability Information and Assistance Line (DIAL) and to support two initiatives focused on strengthening the caregiving infrastructure. 

Caregiving

The President’s budget includes funding to begin to implement the 2022 Administration for Community Living’s National Strategy to Support Family Caregivers and for an initiative to expand and stabilize the direct care workforce. The National Strategy provides a blueprint for building a system that provides the support caregivers need. The budget provides a total of $53 million across several programs to begin implementation, with investments in expanding direct services to support family caregivers today and building capacity to better support them in the future. The request includes $250 million, an increase of $45 million, for Family Caregiver Support Services; $16 million, which is $4 million above FY 2023 enacted, for Native American Caregiver Support Services; and $14 million, an increase of $4 million, for the Lifespan Respite Care Act program. 

Centers for Disease Control and Prevention (CDC)

Access to Vaccines

As a complement to the successful Vaccines for Children program, the budget establishes a Vaccines for Adults program. This new capped mandatory program will provide uninsured adults with access to routine and outbreak vaccines recommended by the Advisory Committee on Immunization Practices at no cost. The budget would also expand the Vaccines for Children program to include all children under age 19 enrolled in a separate Children’s Health Insurance Program.

Health Resources and Services Administration (HRSA)

Autism CARES Act

Programs authorized by the Autism CARES Act administered by HRSA are increased in the President’s budget by $1 million to a total of $57 million. This funding goes to research and development of evidence-based physical and behavioral health interventions as well as interdisciplinary training of health professionals through the Leadership Education and Neurodevelopmental Disabilities (LEND) program.

Suicide Prevention

In 2021, approximately 1 in 5 adults in the United States had a mental illness in the past year and 12.3 million adults had serious thoughts of suicide. The FY 2024 budget provides $4.9 billion for SAMHSA’s mental health activities, an increase of $2.2 billion over FY 2023. The proposed investments will address suicide prevention, increase crisis response, and provide direct services to people experiencing homelessness.

988 National Suicide Prevention Lifeline

In July 2022, SAMHSA transitioned the National Suicide Prevention Lifeline from a 10-digit number to 9-8-8, a 24/7 lifeline that provides access to trained counselors to people in crisis. With new funding in FY 2022, the 9-8-8 program documented a 45 percent increase in contact volume. SAMHSA estimates that the 9-8-8 call centers will respond to approximately 6 million contacts in 2023—compared to approximately 3.6 million answered contacts in 2021. In FY 2024, SAMHSA will dedicate $836 million to the 9-8-8 and Behavioral Health Services program, an increase of $334 million over FY 2023 enacted. This investment will increase the capacity for 988 to respond to 100 percent of the estimated 9 million contacts in 2024.

See National Alliance for Mental Illness statement for more information about how the budget impacts mental health programs

National Institutes of Health (NIH)

The two institutes that provide the most research related to Autism are the National Institute on Child Health and Human Services (NICHD) and the National Institute of Mental Health (NIMH). While NIMH receives a $200 million budget, NICHD is level-funded in the President’s budget.

Department of Education

For the Individuals with Disabilities Education Act (IDEA) Part B grants to states, the Administration is requesting $16.3 billion, an increase of $2.1 billion over the 2023 enacted level. If enacted, this funding level represents the largest increase in the federal contribution toward meeting the excess cost of special education in two decades and makes a significant first step toward fully funding IDEA. Grants would cover nearly 13 percent of the national average per pupil expenditure and provide an estimated average of $2,170 per child for about 7.5 million children ages 3 through 21. The budget also includes $502.6 million for the Preschool Grants program, an increase of $82.6 million over the 2023 enacted level, and provides an average of $1,066 per child for over 471,000 children with disabilities expected to be served under the program in 2024. 

The Transition to Postsecondary Education Programs within the Higher Education Act is provided $15 million, an increase of $1 million over FY 2023. 

Supported employment is level-funded at $22.5 million.

Department of Justice (DOJ)

The Budget provides $3 million for Kevin and Avonte’s Law within the Department of Justice. Kevin and Avonte’s Law is a law that protects children with Autism or other developmental disabilities who may wander away from safety.

Social Security

The budget requests a 10% increase in funding for the Social Security Administration to help address the ongoing customer service crisis. Additional funding increases are urgently needed to improve the processing of disability claims and reduce call wait times.

Next Steps

This is just the beginning of the budget and appropriations cycle. The next steps are for the House and Senate to develop topline budget resolutions followed by the 12 appropriations subcommittees deciding how much each program will receive. With a divided Congress that has narrow majorities, we expect that the process will again take most of the year to be completed. 

The Autism Society is working with bipartisan disability champions in Congress on Dear Colleague letters with recommendations for the highest possible funding levels for programs that support Autistic individuals and their families and professionals.

A note, due to April being busy with Autism Acceptance Month, Capitol Connection will go out once. 

The post Capitol Connection: March 23, 2023 appeared first on Autism Society.

Heumann’s leadership and advocacy were instrumental in the passing of several groundbreaking pieces of legislation, including the Americans with Disabilities Act, the Individuals with Disabilities Education Act, and the Convention on the Rights of Persons with Disabilities. Her impactful contributions to the field of disability rights also include serving as Assistant Secretary for the Office of Special Education and Rehabilitative Services during the Clinton Administration and as Special Advisor for International Disability Rights at the U.S. State Department under the Obama Administration.

Heumann once stated, “Disability only becomes a tragedy when society fails to provide the things we need to lead our lives.” Her life work was dedicated to ensuring that individuals with disabilities had access to the same opportunities as their non-disabled peers, including job opportunities and barrier-free buildings.

Kim Musheno, Vice President of Public Policy, highlighted Heumann’s incredible impact, saying, “In addition to being a tenacious activist and change-maker, Heumann was also a dedicated mentor who sought to ensure that her legacy of fighting for full access, civil rights, and community-based supports continued.” 

To learn more about Judith Heumann’s inspiring legacy, we invite you to explore her books, movies, TED talks, and podcasts on JudithHeumann.com.

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In this edition of Capitol Connection, find the Autism Society’s legislative goals for the 118th Congress, a welcome letter to all Members of Congress, an update on the federal budget, and legislation reintroduced in Congress. Resources on the unwinding of Medicaid,  988 hotline implementation, and ABLE accounts are also included. New alerts and sample letters are now posted on our Action Center to help educate Members of Congress regarding legislation introduced in the new Congress. 

The Passing of Civil Rights Leader, Judy Heumann

The Autism Society of America joins with the rest of the disability community in mourning the passing of Judith Heumann (March 4, 2023), a longtime civil rights leader and activist. Heumann is well-known for her leadership that resulted in the final regulations of Section 504 Rehabilitation Act going into effect, the Americans with Disabilities Act, IDEA, and the Convention on the Rights of Persons with Disabilities. She served as Assistant Secretary for the Office of Special Education and Rehabilitative Services during the Clinton Administration and as Special Advisor for International Disability Rights at the U.S. State Department under the Obama Administration. To learn more about Heumann’s legacy, books, movies, TED talks, and podcasts, see her website. Also, see the Autism Society’s full statement.

Budget and Appropriations

President Biden is scheduled to release his Fiscal Year (FY) 2024 budget proposal on Thursday, March 9th. The next step would be for the Budget Committees to release their budget resolutions. However, the Budget Committees have not been able to come to an agreement on an overall budget for three consecutive years; and, this year, House conservatives have vowed not to allow the debt ceiling to be raised without extracting major cuts. House Speaker Kevin McCarthy (R-CA) pledged to write the fiscal 2024 appropriations bills at the fiscal 2022 topline level. That would total more than $130 billion in cuts. While the Budget Committee has not released details, a list of potential cuts was floated by Committee Chairman Arrington (R-TX) last week that was not very detailed. Disability advocates are also concerned that Medicaid will be a target. 

In a letter released by the Washington Center for Equitable Growth over 200 economists urged congressional leaders to lift the debt ceiling swiftly and without conditions to stave off catastrophic default. The Senate Democratic Policy and Communications Committee released a report on February 15th detailing the impacts of potential funding cuts being proposed by Republicans in the U.S. House of Representatives.

Meanwhile, Senate Appropriations Chair Patty Murray (D-WA) and Susan Collins (R-ME) stated they are working to put together an aggressive roadmap to get Senate appropriations bills done in a timely manner, even if the Budget Committees are not able to come to an agreement on a budget resolution. 

Watch for a detailed summary of the President’s Budget in the next edition of Capitol Connection.

Home and Community-Based Services
On January 26th, Senator Bob Casey (D-PA) re-introduced the Better Care Better Jobs Act (S.100), along with 39 co-sponsors. This measure increases Medicaid funding for Home and Community-Based Services (HCBS) with a 10 percent increase in the federal match, increased funding for administrative activities, provides more benefits for direct care workers, improves oversight, makes spousal impoverishment protections permanent, and will make the Money Follows the Person program permanent. The Autism Society has endorsed this bill. Please reach out to your Members of Congress to educate them about the need to support Medicaid-funded supports and services. Read a summary of the bill here. 

Employment

On February 27th, Senators Bob Casey (D-PA) and Steve Daines (R-MT), and Representatives Bobby Scott (D-VA) and Cathy McMorris Rogers (R-WA) re-introduced the bipartisan, bicameral Transformation to Competitive Integrated Employment Act (S. 533 / H.R. 1263) (see Autism Society statement). This bill phases out the use of subminimum wages and supports states to transform their systems to do so. 

On the same day, the General Accounting Office (GAO) released a report on the status of the subminimum wage and the 14(c) program across the country. The report found that from 2010 to 2019, the number of people with disabilities nationwide earning subminimum wage fell roughly in half, from 296,000 to 122,000. The number of employers using subminimum wage certificates also declined from 3,117 to 1,567, with less than 1,300 employers authorized as of August 2021. Also, see a related story from the Grid and a press release from the House Education and Workforce Committee. Educate your Members of Congress about this issue using the Action Center’s sample letter.

508 Regulations

Following ongoing bipartisan efforts led by U.S. Senator Bob Casey (D-PA), the U.S. Department of Justice (DOJ) released data on the accessibility of federal government technology for the first time in a decade. The DOJ is required by Section 508 of the Rehabilitation Act to provide a report to Congress and the President every two years on federal technology accessibility. Despite this mandate, the latest report was from 2012. The report found, among other things, that one in 10 public-facing websites at major federal departments and agencies are not fully accessible for people with disabilities. Three in five internal websites at major federal departments and agencies are not fully accessible to people with disabilities.

Senator Casey criticized the data as insufficient and is urging DOJ and the entire federal government to prioritize technology and web accessibility and transparency.

Education

Valerie C. Williams, director of the Office of Special Education Programs (OSEP), released her third blog on informal removals in a discussion series on discipline and behavior. Williams, along with the OSEP-funded Center for Parent Information and Resources (CPIR), writes about why informal removals of students matter. “These [informal] removals often go uncounted, are not reported as suspensions, and fly under the radar built to ensure that the Individuals with Disabilities Education Act’s (IDEA’s) discipline protections are exercised,” Williams said. This discussion series is being published to bring awareness to the discipline guidance and other technical assistance the department published last year. 

118th Congress

Autism Society Legislative Agenda

The Autism Society of America Public Policy Committee developed and the Board recently approved its legislative goals to guide its work over the next two years of the 118th Congress. These include legislation to reauthorize and expand the Autism CARES Act, support direct services professionals and increase home and community-based services, increase employment opportunities, prevent restraints and seclusion in schools, provide safe interactions with law enforcement and first responders, and prevent injuries related to water safety and drowning. A letter was sent to Members of Congress welcoming them to the new session along with the legislative goals. The Autism Society also participated with eight other national developmental disability organizations to update its comprehensive goals for the new Congress. 

CPSD Legislative/Administrative Agenda 

The Collaboration to Promote Self Determination, a coalition of developmental disability organizations (including the Autism Society) that works toward full community integration released its administrative priorities and legislative priorities for the 118th Congress. Priorities include promoting competitive and integrated employment, expanding home-and-community-based services, and assisting in the transition period out of the K-12 system. 

Resources

Surveillance

CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network released its first-ever report looking at data on adolescents aged 16 years in 2018 with Autism Spectrum Disorder (ASD). This report marks an expansion of the CDC’s ASD surveillance system to help communities identify healthcare needs and gaps in transition planning for adulthood among youth with ASD. Read the full article in the Journal of Adolescent Health. 

Unwinding of Public Health Emergency

The Centers for Medicare & Medicaid Services (CMS) released a resource that shows each state’s timeline for initiating Medicaid redeterminations. This is related to the unwinding of the COVID Public Health Emergency. As states start to unwind, it is important to help individuals ensure their contact and personal information is up to date with the state’s Medicaid office and that families pay attention to any notices. To access other important resources on the end of the Public Health Emergency, the Autism Society developed an “End of Public Health Emergency Guide“. In this guide, readers will find details on Medicaid unwinding and state progress and plans. Key information on how to advocate for state PHE waivers is also included.

988 Report
The Kaiser Family Foundation released an analysis on the implementation of the new 988 number for the national suicide prevention and mental health crisis hotline. They found that since the launch of 988, Lifeline has received over 2.1 million contacts with over 1.43 million calls, more than 416,000 chats, and more than 281,000 texts. However, the answer rate varies by state. Seven states have an answer rate of 51-69% while 12 states answer 90-98% of calls. The analysis shows that nationally, about 10 percent of calls are transferred to out-of-state overflow facilities and 11 percent are abandoned by the caller. 

ABLE and Social Security

Last month, the National Association of State Treasurers’ national outreach initiative ABLE today collaborated with the state ABLE programs and the U.S. Security Administration (SSA) on a national webinar, “Social Security Benefits and ABLE Accounts”. The information session highlighted the benefits of owning an ABLE account and the relationships between ABLE accounts and Social Security Disability Benefits. Visit abletoday.org/ssa to watch the webinar recording. If you are interested in helping put together local training on ABLE accounts, contact Delancy Allred at Dallred@autsim-society.org.

The post Capitol Connection: March 9, 2023 appeared first on Autism Society.

This bill phases out the use of subminimum wage certificates for people with disabilities, which many see as outdated and unfair. The bill also authorizes funds to help states transform their employment systems to promote competitive integrated employment for people with disabilities. It also authorizes technical assistance and funding to employment providers to help them transform their business models to continue supporting people with disabilities in work with competitive wages.

The Autism Society is the nation’s oldest and largest grassroots organization representing the Autism community. At the core of the Autism Society’s work is a goal to influence meaningful change for Autistic indviduals to live fully.

“Increasing employment opportunities for individuals with Autism is one of our highest legislative priorities,” stated Christopher Banks, President and CEO of the Autism Society of America. “Employment plays a pivotal role in transitions to adulthood, independent living, socialization, self-worth and confidence.. This bill will help us achieve more equitable employment opportunities by assisting states to remove barriers that prevent competitive integrated employment. It will also help the many individuals who have lost their jobs due to the pandemic, and support them as they return to work.”

The Autism Society urges Congress to move this bill quickly through Congress.

The post Statement of the Autism Society of America on the Introduction of the Bipartisan Transformation to Competitive Integrated Employment Act appeared first on Autism Society.

In this edition of Capitol Connection,  find an update on this year’s Disability Policy Seminar, a guide on how to prepare for the unwinding of the public health emergency (PHE), and updates on federal legislation and administrative actions. Please use our Action Center to urge Members of Congress to support legislation for the Autism community. 

Disability Policy Seminar

Due to unforeseen circumstances at the venue, we are unable to host the Disability Policy Seminar in its usual format this year. The  seminar will now have two components:

Monday, April 24th: Virtual Policy Programming and Training

This day of programming will deepen your knowledge about numerous issues affecting people with disabilities and predictions for the new Congress by hearing from national experts. Participants will also receive training about the most effective practices to advocate for these priorities during your meetings with members of Congress.

Thursday, April 27th: “Fly-In Hill Day”

Join us in DC on Capitol Hill to meet with your members of Congress to share priorities for people with disabilities. While we are hoping as many people as possible can join us in person for the fly-in day, virtual meetings can also be made with your members of Congress. Stay tuned for more information about the registration and scheduling process soon!

Seeking State Captains: Please contact Delancy Allred if you are interested in helping us organize Hill Visits for seminar participants in your state. Hill visits can be in-person or through Zoom and State Captains are given all resources to help them through the process.

118th Congress Organizing

Committees

Congressional committees for the 118th Congress have been established. The Autism Society created a list of Key Committees with jurisdiction in disability policies in the House and the Senate. Members that are new to the committee for this session are in bold. Please consider reaching out to these new Members to introduce your affiliate as a resource to them. Please let us know if you have any insight into any new members of Congress.

Local Funding Projects Update 

Senator Ben Cardin (D-MD) developed a guide for all local non-profit organizations to help them submit proposals for local funding projects. The new guide for Fiscal Year 2024 makes some improvements from last year’s guide that we shared with you. This guide expands on what basic information is needed to submit an earmark; provides a more detailed earmark timeline; provides direct links to federal agency websites to show potential applicants what is required to officially apply for funds/rules on spending funds; and lists the range of funding that Senators Cardin and Van Hollen received for each earmark type in FY23 as a reference for FY24 requests. The House Appropriations Committee is still organizing and does not yet have any news on earmarks on the site. If interested, please contact each target member of your Congressional Delegation by the end of February or the beginning of March to let them know you are interested in applying for an earmark request. For more information or assistance, contact Kim Musheno at kmusheno@autism-society.org. 

Administrative & Legislative Updates

Budget and Debt Ceiling

The Autism Society of America joined a letter with 140 other organizations urging the congressional leadership to raise the debt ceiling without any stipulations. Defaulting on the national debt could have dire consequences for people with disabilities and the programs that support them, especially Society Security and Medicaid. Defaulting on the debt could also have broader economic consequences that could indirectly impact people with disabilities. It could lead to higher interest rates and inflation, which could make it harder for people with disabilities to access affordable housing, transportation, and other essential goods and services.

HCBS Rally on the Hill

The Arc of the United States is organizing an in-person rally in Washington, DC next week to rally support for home and community-based services, paid leave, and child care. Organizers will be delivering petitions to Members of Congress. For those in the area, please feel free to join us on Tuesday, February 28th at 11:30 am at Columbus Circle, directly in front of Union Station (look for The Arc’s orange T-shirts).

Social Security 

Senators Sanders (I-VT) and Warren (D-MA), along with Representatives Schakowsky (D-IL) and Van Hoyle (D-OR) introduced the Social Security Expansion Act. The proposed legislation includes a range of provisions designed to improve the program’s benefits, increase revenue, and enhance the long-term financial sustainability of Social Security. In addition, the bill includes several measures to improve Social Security for specific groups. For example, it would provide a caregiver credit to individuals who provide care to family members or loved ones. The bill would also restore student benefits to children of disabled and deceased beneficiaries until they reach age 26. Read the press release and fact sheet for more information. 

Caregiving

On February 2nd, Sen. Durbin (D-IL) and Rep. Jahana Hayes (D-CT) introduced the Caring for All Families Act (S.242). This bill updates the definition of family in the Family Medical Leave Act (FMLA) to include a broader range of caregiving relationships that are entitled to FMLA protections. The legislation also guarantees that parents and other family caregivers have the ability to take time off to attend a medical appointment or school function, such as a parent-teacher conference, without the risk of losing their job. 

Employment

Senators Bob Casey (D-PA) and Steve Daines (R-MT), and Representatives Bobby Scott (D-VA) and Cathy McMorris Rogers (R-WA)  will re-introduce the bipartisan, bicameral Transformation to Competitive Integrated Employment Act in the Senate and House of Representatives. This bill phases out the use of subminimum wage certificates for people with disabilities, which many see as outdated and unfair. The bill also authorizes funds to help states transform their employment systems to promote competitive integrated employment for people with disabilities. It also authorizes technical assistance and funding to employment providers to help them transform their business models to continue supporting people with disabilities in work with competitive wages. The Autism Society has been meeting with congressional staff to educate them about the bill and urge their support. Readers can help by contacting their members of Congress through our Action Alert. 

Health

The Senate Health, Education, Labor, and Pensions Committee on Thursday adopted committee rules for the 118th Congress, laying out healthcare issues where they hope to find common ground. Members of both parties agreed on a goal to lower the cost of prescription drugs, address the ongoing mental health care crisis, and address pandemic preparedness. The committee is under new leadership this Congress, with Sen. Bernie Sanders (I-VT) at the helm and Bill Cassidy (R-LA) serving as ranking member. The committee hosted its first hearing last week and focused on the shortage in the healthcare workforce. A few senators questioned the panelists on the shortage of home health aides and direct support workers and how we can better support them. 

Nutrition

On February 15th, the Social Security Administration (SSA) announced a proposed rule to update regulations to remove food from the calculation of In-Kind Support and Maintenance (ISM). SSA expects that these changes will simplify SSA’s rules, making them less cumbersome to administer and easier for the public to understand and follow. Information on how to provide comments by April 17th, 2023 can be found here.

Family Caregiving

On February 14th, the Administration for Children and Families (ACF) announced a proposed rule that will make it easier for child welfare agencies to license relatives to foster children whose parents cannot care for them. This rule addresses one of the significant challenges facing grandparents and other relative caregivers and fulfills a key federal commitment made in the 2022 National Strategy to Support Family Caregivers. Public comments are due by April 17th, 2023. 

Resources

Autism Society PHE Unwinding Guide

The Biden Administration announced that the Public Health Emergency (PHE) that was declared due to the Covid-19 pandemic will end on May 11th. This will bring about many changes such as Medicaid qualification status, and vaccine, testing, and treatment coverage. It will also end Medicaid flexibilities that states were able to request due to the pandemic. To help prepare for these changes, the Autism Society developed an “End of Public Health Emergency Guide“. In this guide, readers will find details on Medicaid unwinding and state progress and plans. Key information on how to advocate for state PHE waivers is also included.

New Resources to Support the Healthy Relationships 

The Family and Youth Services Bureau at the Administration for Children and Families in the U.S. Department of Health and Human Services developed lessons and toolkits on healthy relationships and sexual health for youth with intellectual and developmental disabilities. The first resources are lessons on how to have healthy online relationships with a focus on youth aged 10-21. The second resource is a toolkit for parents and caregivers on how to have discussions on adolescence, sexual health, and online safety.  

ACL Grant

The Center on Youth Voice, Youth Choice (CYVYC), a national research, training, and resource center that promotes the use of alternatives to guardianship for youth with intellectual or developmental disabilities,  currently provides technical assistance and support to eight states including  Georgia, Indiana, Michigan, New Jersey, Oregon, South Carolina, Vermont, and Wisconsin through a grant from the Administration for Community Living (ACL). The centers are expanding their work and seeking three more states for whom they will provide support. Applications are available online and due by 8:00 pm ET on February 24th. If you have any questions about the application process or need any accommodations, please contact Morgan Whitlatch at mwhitlatch@cpr-ma.org or 202-596-6116. The recorded informational session webinar is available for future viewing on the CYVYC website. 

The post Capitol Connection: February 23, 2023 appeared first on Autism Society.

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. 

Resources

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. 

The post Capitol Connection: February 9, 2023 appeared first on Autism Society.

In this edition of Capitol Connection, find updates on the debt ceiling debate and appropriations, the new Interagency Autism Coordinating Committee strategic plan, an Education Department listening session on LRE, and U.S. Supreme Court decisions. In addition, we included an application for a new technical assistance award along with new webinar opportunities. 

Congressional Calendar

The House and Senate are back in session this week. Both chambers are still organizing their committees. Watch for updates in upcoming issues of Capitol Connection.

Debt Ceiling

Last week, Treasury Secretary Janet Yellen warned Congress that the debt ceiling will so be reached. This means the federal government will run out of the necessary funds to pay for existing debts. The debt ceiling must be lifted to prevent defaulting on our national debt. Yellen sent a letter to House Speaker McCarthy informing him that she would begin using “extraordinary measures” to pay the debt but urged Congress to take action to protect the full faith and credit of the United States. House Appropriations Committee Ranking Member DeLauro (D-CT) sent a letter to all cabinet secretaries seeking information about the impact on their programs if appropriations levels were cut back to FY22 funding. She asked for responses by February 3rd. The Autism Society will be watching this debate closely to monitor its impact on funding for programs important to people with Autism and their families.

IACC

On January 18th, Joe Joyce, a member of the Autism Society of America’s Board of Directors, delivered oral testimony before the Interagency Autism Coordinating Committee (IACC). In his remarks, using his personal experience as a father and as a national leader, he focused on the crisis in the services system for those with Autism, especially for those with significant functional limitations. His written testimony contains additional resources and recommendations for Congress and the Administration. IACC members also voted to support its new draft Strategic Plan for 2022-2023. In addition to a range of topics, the plan calls for a substantial increase in federal government funding for Autism research to reach $685 million by 2025. The committee suggests the increased funding go to research in evidence-based interventions, lifespan needs, and culturally competent tools and services. Dr. Susan Daniels, the committee chair, expects the final version to be released in April or May.

Housing

The U.S. Department of Housing and Urban Development announced that it is awarding $24.7 million for Section 811 Mainstream voucher program for people with disabilities. The funding goes to 98 local public housing authorities. Over 2,000 families are expected to benefit from the funding. Contact your local housing authority to help ensure that people with Autism benefit from these funds.

CCD Annual Meeting 

The Autism Society policy team participated in the Consortium for Constituents with Disabilities (CCD) annual business meeting. The purpose of the meeting is to select new board leaders, organize task forces, and strategize for the coming year. Task Force leaders also provided reports on 2022 accomplishments and plans for 2023. The Autism Society provides leadership on both the Education and DD, Autism, and Family Supports Task Forces.

US Department of Education Listening Session

Stacey Hoaglund, President of the Autism Society of Florida, represented the Autism Society of America in a listening session conducted by the US Department of Education (ED) regarding the implementation of IDEA’s requirement to provide education services in the “least restrictive environment” or LRE. IDEA establishes a presumption that children with disabilities will be educated in classes and settings with their nondisabled peers unless the education of children with disabilities cannot be achieved satisfactorily in those classes and settings with the use of supplementary aids and services. ED asked participants questions related to how LRE is currently being implemented and how it might be improved. Hoaglund suggested providing additional training to parents regarding their rights, training teachers to presume competence, and providing the necessary support and services to students to help them succeed in the classroom and during their years of transition preparation to gain a more meaningful outcome.

21st Century Long-Term Care Caucus 

Representatives Annie Kuster (D-NH) and Bryan Steil (R-WI) announced a new caucus entitled the 21st Century Long-Term Care Caucus. The bipartisan caucus will focus on ways to strengthen the long-term care system in America. This action could help bring attention to this important issue.

Supreme Court

Perez v Sturgis

On January 18th, the US Supreme Court heard oral arguments on a special education case entitled Perez v Sturgis Public Schools. This case brings the question of whether individuals who have an IDEA settlement have to exhaust the administrative process before bringing a lawsuit under the Americans with Disabilities Act (ADA). While Miguel Luna Perez was a deaf student in the Sturgis Public Schools system in Michigan, he was assigned an aide who did not know sign language, and his parents were told he would graduate with a certificate of completion after he received all As and Bs throughout his high school career. The family settled with the district under a FAPE (free and appropriate public education) complaint and Miguel was assigned to four years in a school for the deaf. The family then brought a lawsuit citing ADA, leaving the case to go to the Supreme Court. The decision will be released sometime this summer and will have implications on how families can pursue legal actions through IDEA and ADA. See a summary of the case and a recording of the argument.

Cummings v. Keller

The National Council on Disability, an independent advisory agency, released a policy brief on a legal decision impacting people experiencing disability-based discrimination. Cummings v. Premier Rehab Keller PLLC: Implications and Avenues for Reform examines the U.S. Supreme Court decision of April 28th, 2022. In that case, justices held that a plaintiff bringing suit to enforce the anti-discrimination provisions of Section 504 of the Rehabilitation Act of 1973 or Section 1557 of the Patient Protection and Affordable Care Act cannot recover damages for emotional distress resulting from intentional disability-based discrimination. The policy brief analyzes the court’s decision, discusses the challenge of securing injunctive relief when emotional distress damages are not available, describes the impacts of Cummings on people with disabilities, lists the availability of emotional distress damages under state laws, and recommends a legislative fix.

State Advocacy

Technical Assistance on Plain Language

SAR-TAC, the self-advocacy resource and technical assistance center funded by the HHS Administration for Community Living and managed by Self-Advocates Becoming Empowered (SABE) is announcing a new technical assistance opportunity for four state advocacy groups on enhancing plain language or easy-to-read information. The technical assistance will cover two training sessions. The first is for self-advocates and others working on making their information sharing more accessible; the second training is for government agencies and nonprofits. Apply here using this plain language application by February 16th. 

Federal Connection 

The Coalition on Human Needs is hosting a new twice-monthly Zoom meeting and an email group for State Advocates on Congressional and Federal updates. They are calling the group The Federal Connection. The first meeting was held last week and included remarks from Representative Rosa DeLauro (D-CT). In addition, they previewed their state-by-state data resource. Sign up for the meeting invite and listserv here. They send recordings and all information shared from meetings in an email in case you are unable to attend the Zoom calls. 

New Resources on State Paid and Unpaid Leave Policies 

New America, a think tank that provides reports to the public, released new explainers on paid and unpaid leave policies in each state. The first is entitled ​​Paid and Unpaid Leave Policies in the United States and provides an overview and data on state use of the Federal Family and Medical Leave Act (FMLA). The second is titled Paid Leave Benefits and Funding in the United States and offers a more specific overview of programs in each state related to benefits and payroll contributions. See also, a new Washington Post article about bipartisan efforts to pass paid leave legislation.  

Social Security Benefits and ABLE Accounts Webinar

The National Association of State Treasurers is holding a webinar on ABLE Accounts and Social Security benefits on Wednesday, February 22nd at 1:00 pm ET. The webinar will feature guest speakers from the Social Security Administration. You can register for free through this link. Topics covered include general knowledge about the benefits of owning an ABLE Account and the new ABLE Age Adjustment Act; knowledge of the relationship between ABLE Accounts and Social Security Disability Benefits; understanding of ABLE-related information that must be provided to SSA; and resources on SSA benefits and ABLE Accounts.

Disability Policy Seminar

The annual Disability Policy Seminar, originally scheduled for the end of March, has been postponed due to unforeseen circumstances with the hotel. Details about a new date and event agenda will be coming soon.

The post Capitol Connection: January 26, 2023 appeared first on Autism Society.

Read Joe Joyce’s full testimony below:

Thank you, Dr. Gordon and the rest of the Committee for allowing me to provide brief comments. I am providing this testimony on behalf of the Autism Society of America; and as a father of two adult sons with developmental disabilities.

My wife Elise and I are parents of two individuals with significant functional limitations: David, age 24, has Autism, and Matt, 26, has Down Syndrome; both have intellectual and developmental disabilities. Developmental disabilities are defined in law as physical or mental impairments that begin before age 22, are likely to continue indefinitely, and result in substantial functional limitations in at least three major areas of self-care.In spite of these limitations, both of our young men are loved and valued members of our family and community.

Elise and I were finally able to transition David to a home that we bought for him. However, it was a massive struggle to find direct support professionals and a licensed agency to operate the home. Many agencies declined due to inadequate provider rates to serve high-risk residents. We are fortunate to have some resources for this planning but millions of families do not. Matt continues to live with us as we plan his transition. We know that David and Matt will not be able to care for themselves without significant support. We worry about what will happen to them when we are no longer here to take care of them and coordinate and oversee their services.

The Home and Community-based Medicaid waiver is the program that most individuals and families depend on to get the services they need to keep family members at home, get habilitation, behavioral health, and supported employment. However, the only service that states are required to cover is home health. Most other services are optional. States are also permitted to limit the number of people eligible for waivers resulting in waiting lists, that in some states are many years long. In addition, states vary in the way they screen and collect data on waiting lists and they vary in the pay rates for direct support professionals.

Waiting list totals across all disabilities for states are estimated to be over 800,000. Even more troubling, individuals wait on average 39 months to secure services, with reports of some waiting 15 years. There is an urgent need to remedy this crisis as the prevalence of Autism is expected to increase by 15 percent over the next ten years.

New data from ANCOR finds that a significant shortage of direct support professionals has reached catastrophic levels. The longstanding workforce crisis, exacerbated by the pandemic, has led to closures of critically needed services and a denial of access to community-based support. Vacancy rates for full-time direct support positions experienced a 45% increase.

My family experienced this shortage first-hand. During the height of the pandemic, David’s day habilitation services (Hope Springs) were completely closed for 12 months, putting significant strain on working parents. Many of the direct service providers sought employment elsewhere, resulting in a significant shortage of staff. We are so fortunate that Hope Springs Farm survived the crisis, thanks, in part to federal government funding packages. However, due to the staff credentials required for high-risk behaviors, David has not yet been able to return to the day program at pre-pandemic levels.

In all the years I have been involved in the Autism Society, I have never been more worried about the state of our nation’s service system for people with Autism and other developmental disabilities. We receive way too many calls to our hotline related to individuals and families suffering without services. The Administration and Congress must find the political will to help states provide these services.

We have provided recommendations in our written testimony for your consideration. We hope that you will use the influence of this body to do what you can within the agencies around this table to make an impact and to make recommendations to Congress to improve services for those with Autism.

Thank you for your attention to this important issue.

Read the full written testimony here.

The post National Statement: Joe Joyce, member of the Autism Society of America’s Board of Directors, delivered a testimony before the Interagency Autism Coordinating Committee (IACC) appeared first on Autism Society.