Volume 26, Issue 1, 2025

Every March, the National Association of Councils on Developmental Disabilities (NACDD) and its partners collaborate to lead Developmental Disabilities Awareness Month (DDAM). The annual campaign highlights how people with and without disabilities come together to form strong communities.

NACDD’s 2025 theme, We’re Here All Year, emphasizing that community, accessibility, and opportunities for people with developmental disabilities should be recognized and championed every day—not just in March. This month reminds us that individuals with developmental disabilities are valuable members of our communities and deserve full participation in all aspects of life, including education, employment, recreation, and civic engagement.

Established in 1987 by President Ronald Reagan, Developmental Disabilities Awareness Month highlights the importance of fostering a society where people with disabilities are empowered to contribute to their communities. While March provides an opportunity for heightened awareness, true awareness happens when we commit to creating accessible environments and productive opportunities year-round.

Celebrate DD Awareness Month with NACDD!

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Budget Notes

Governor Josh Shapiro released his executive budget on Tuesday, February 4. We will be watching line items as the legislature begins moving forward with hearings and building their negotiated budget. Here are some highlights from the Governor’s executive budget.

• Program Measures
  • The number of individuals receiving Home and Community Based Services (HCBS) and autism services has remained nearly steady since the 2019-20 fiscal year (FY) at 917 to the estimated 2025-26 FY at 935. This is only a 2% increase.
  • Employment services have risen 8.7% but competitive integrated employment rose 29.9% since the 2019-20 FY.
  • The average cost of serving individuals in the community has increased under the consolidated waiver to $217,152, under the community living waiver to $43,996, under the person/family directed supports waiver to $23,598, and under the autism services waiver to $70,123.
  • Medicaid enrollees under disability only make up 16% of the number of eligible people, or 470,610 estimated for 2025-26, however disability appropriations make up 47% of all assistance, or $25.22 billion. This is $53,592 per enrollee under disability but does not include newly eligible individuals under Medicaid expansion.
• Funding Measures
  • Medical assistance for workers with disabilities would have an increase in state funds by 19.1% to $123.72 million, and 24.4% increase in federal funds to $142.725 million. This includes $16.725 million to reflect a change in caseload and utilization, $6.665 million to reflect change in available Tobacco Settlement Funds, and $998,000 to reflect the impact of Workers with Job Success program. This program considers eligible disabilities to include physical, developmental, mental health and intellectual disabilities.
  • ID State Centers would see a 4.8% decrease in state funds. However, total funding would increase by 4% due to increases in federal funding and administrative collection.
  • Early Intervention (Birth to 3 years of age) would receive an 8.7% increase to $201.43 million under the Governor’s proposal. This includes $7.441 million to continue the current program and a $10 million initiative to provide a rate increase to early intervention providers. Federal funding under Medical Assistance for Early Intervention would increase 17.1%. The total increase therefore for this age group of Early Intervention services would be 10.58%. 54,300 children are estimated to participate for the 2025-26 FY, a 21.1% increase since 2019-20.
  • Early Intervention (Ages 3-5) would receive a 3.5% increase to $429.7 million. This increased funding would be used to provide services to additional children from ages 3 through 5. This would be a total increase in state funding from the 2023-24 school year of $63.73 million or 17.4%. Federal funding under IDEA would increase 87.5% from $16 million to $30 million
  • Mental Health Services would receive a 3.4% increase to $988.8 million. Total funding for Mental Health Services including federal and administrative would increase 4.8%
  • Special Education (Public Schools) funding would increase 2.7% to $1.527 billion. This includes a $40 million initiative to provide increased resources for school district special education instruction. The total increase in state funding since the 2023-24 school year would be $140 million, or 10%.
  • Special Education (Private Schools) funding would increase a 9% increase to $162.26 million. This would be a total increase in state funding from the 2023-24 school year of $20 million or 14.1%.
  • Centers for Independent Living would receive a 38% increase in funding with a $1 million initiative to provide additional support to recruit and hire staff, provide services to individuals with more diverse or significant disabilities, and ensure that individuals can reside in their chosen homes and participate in their communities
  • Vocational Rehabilitation would receive a 10.3% increase with a $5 million initiative to help maintain services for Pennsylvanians with disabilities seeking employment through personalized services, vocational guidance, goal setting, job placement, and counseling. This funding is proposed to allow the Office of Vocational Rehabilitation (OVR) counselors to provide hands-on, individualized services to those seeking gainful employment in PA.

Budget Hearings

The House met with the Pennsylvania Department of Education (PDE) on February 24^th. During the hearing, Representative Abigail Salisbury raised concerns about the enforcement of IEPs and Section 504 plans. Acting Secretary Dr. Carrie Rowe reassured the representative that Pennsylvania is committed to enforcing laws for students with disabilities. There was concern raised over a potential $600 million reduction in Individuals with Disabilities Education Act (IDEA) funds. Dr. Rowe reminded the committee that parents still have state-level options to seek redress for issues related to special needs accommodations. Representative Aerion Abney discussed a 10% increase in special education students over four years. The evaluation process for IEPs was outlined, including the possibility of students exiting special education if support is no longer needed.

The Senate met with PDE on February 26^th. During this hearing, it was mentioned that special education is increasing enrollment. Senator Vincent Hughes, the committee’s Democratic Chair, asked the Acting Secretary to agree that special education students take the same exams as students in regular education. Once confirmed he acknowledged that these regulations likely reflect the skewing of proficiency/grade level results. Again, the fear of the federal government reducing IDEA funding was brought up. Dr. Rowe pointed out if this occurs it will lead to, less achievement as less specialized trained teachers will be in the classrooms, increased dropouts as support services would not be available, and increased local taxes.

There was discussion also from Chairman Hughes that 8-10% of Special Education funding to the state comes from Title I, however, IDEA was adopted with the consideration that the federal government would provide 40% of the costs of special education. In 2023, Governor Wolf’s administration pointed out a study during the budget period that showed the rate of increase needed year-over-year in special education funding to cover total increased costs would be $200 million. Any annual funding under that puts the difference on the local school districts to cover. Total school special education expenditure in Pennsylvania has reached $5.8 billion.

The House met with the Department of Human Services (DHS) on March 5^th. Secretary Valerie Arkoosh started out by pointing out that 23% of Pennsylvanians receive their health care through Medicaid. The Secretary explained that the budget for ID services includes a 7% increase, amounting to $175 million, however these are annualized increases from waiver slots in the previous year not realized, and shifts the state strategy to give counties a budget to manage services more efficiently. She continued that this approach has led to a 19% reduction in the adult emergency waiting list and enrolled an additional 3,000 adults in community living and consolidated waivers. She added that the most recent count shows 3,703 individuals on the emergency waiting list, with over 40,000 individuals currently enrolled and a waiver capacity of 41,555.

Representative Torren Ecker asked about the challenges providers face with funding, particularly in achieving the training or recruitment needed to reach the top tier of performance-based contracting, especially when they are the only providers in a county. Secretary Arkoosh responded that providers with licensing issues or other problems can still participate in the system and encouraged them to contact DHS for technical assistance and training. She mentioned that her team in the Office of Developmental Programs (ODP) frequently organizes groups to discuss enhancing services and improving support for vulnerable populations in the state. Representative Ecker requested a breakdown of how the proposed $5.5 million transfer in Governor Shapiro’s budget proposal to home and community-based services (HCBS) will be utilized, in accordance with Act 54 of 2022. Secretary Arkoosh explained the Augmentation Fund’s purpose, created by the General Assembly to support individuals with intellectual disabilities and autism as state centers closed. She highlighted a successful housing pilot in 10 counties, funded by the Augmentation Fund, which subsidizes rent for homes, a cost not covered by Medicaid.

Representative Marla Brown acknowledged the report on rate inadequacies between home care workers and providers for individuals with intellectual disabilities, noting the difference in rate setting between ODP services and the Office of Long Term Living (OLTL) services. She expressed concern about the difficulty in planning for future expenditures due to irregular rate studies and asked how rates for OLTL services are currently set. Secretary Arkoosh acknowledged the differences in rate-setting requirements between ODP and OLTL, noting ODP’s three-year rate refresh requirement. She expressed openness to discussing a more incremental approach to wage increases with the General Assembly.

Representative Paul Friel addressed concerns about DHS’s interpretation of rules for congregate living for adults with disabilities, highlighting the isolation and lack of community due to strict rules. He asked what could be done in Pennsylvania to change that. Secretary Arkoosh responded, specifying the availability of a wide range of flexible living environments through ODP and emphasizing ongoing engagement with families to find suitable living arrangements. Representative Friel raised concerns about the adequacy of Pennsylvania’s settings rule that limits houses to only two people per duplex, suggesting it might be insufficient for the needs identified by advocacy groups and expressed a desire for further discussion.

Representative Ann Flood asked about the intellectual disability waiting list, noting a 19% reduction and inquiring about the number of individuals expected to be served in fiscal year 2025-2026. Sec. Arkoosh explained the shift from a slot-based to a budget-based approach in managing waiver capacity, which allows for more flexible use of funds and the potential to serve more individuals. She mentioned a current waiver capacity of 41,555 with just over 40,000 enrolled. She highlighted Allegheny County’s efforts to adapt to this new approach. Representative Charity Grimm Krupa noted there was no increase in individuals seeking intellectual disability services in the governor’s budget proposal. Department staff attributed that figure to an error in the governor’s budget and said ODP will reach out.

The PA Senate also met with the Department of Human Services. Senator Haywood asked about Medicaid services for children in special education, expressing concerns about the loss of Medicaid funding and the Children’s Health Insurance Program (CHIP) affecting services like speech therapy for children with special needs. Secretary Arkoosh explained that Medicaid offers a comprehensive range of services for children, particularly through early intervention programs for those aged zero to three, including speech, behavioral, occupational and physical therapy. She highlighted a proposed $10 million increase to improve rates for providers serving this age group and mentioned the benefits for children with intellectual disabilities or autism. She warned of the risks these benefits face due to potential Medicaid cuts. Senator Haywood discussed the importance of Medicaid funding for children in special education and the critical role of affordable childcare in helping families escape poverty. He questioned the effectiveness of paying childcare workers lower wages. Secretary Arkoosh responded to Haywood’s inquiry by stating that paying childcare workers less has resulted in many closed classrooms.

Intellectual Disabilities and Autism Workforce

A survey of 63 organizations representing 11,000 direct support professionals (DSP) provide us with an updated understanding of the state of the workforce that works with individuals with intellectual and developmental disabilities. The average wage is $17.85 with a 14 percent vacancy factor, and 31 percent turnover rate. Increases in state appropriations since the 2023 study show a 5.6 percent increase in wages, nine percent decrease in vacancies, and two percent decrease in the turnover rate. 22 percent of providers are still forced to engage in contract staffing for service, while there is no change in DSP overtime use, at 16 percent of all hours.

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Saving Medicaid

The Arc of the US has created a Medicaid Advocacy Toolkit

Medicaid covers over 3,191,750 including 40% of Pennsylvanians with a disability, 37% of PA children, and more than 537,000 adults receiving long-term supports and services. 69% of PA voters oppose cuts to Medicaid funding. The federal government covers $27.8 billion in Medicaid costs for Pennsylvania in 2023, or 63% of total program costs in PA. Proposed changes that may affect individuals with disabilities include implementing per capita caps rather than matching funds based on actual expenses, elimination of enhanced federal matching funds, and Medicaid work requirements for some individuals. The Economic Policy Institute estimated that if the proposed cuts to Medicaid occur at the level of $880 billion, and the government extends the Tax Cuts and Jobs Act. The bottom fifth of households would lose a net income of 6.8% and the second fifth would lose a net income of 0.7%. The top 1% of household incomes would rise by 3.9%.

More impact statistics on the plan

Impacts per congressional district

An issue brief on Home and Community-Based Services

 

The Rehabilitation Act

Section 504 protections in the Rehabilitation Act are being questioned in a federal lawsuit. Seventeen states filed to get rid of new protections that were implemented in 2024, but even though filing a joint status report stating they did not intend to have the court declare or enjoin Section 504 as unconstitutional on its face, they have not dropped the suit that led experts to agree that is what the lawsuit was asking. Ideally, these states want to ensure the federal government does not spend funding under Section 504 based on gender identity which was included as a possible disability in 2024. These states include Alaska, Alabama, Arkansas, Florida, Georgia, Indiana, Iowa, Kansas, Louisiana, Missouri, Montana, Nebraska, South Carolina, South Dakota, Texas, Utah, and West Virginia.

View a webinar

Contact Your Attorney General

Read the thoughts of an individual with disabilities

 

Civil Rights Disparities of Students with Disabilities

Although only 14 percent of public school students are served under the Individuals with Disabilities Education Act (IDEA), and another three percent by Section 504 of the Rehabilitation Act, these students account for 29 percent of students who receive out-of-school suspensions, and 24 percent of students who were expelled. Sadly, students served under IDEA represent 68 percent of students who were secluded and 76 percent who were physically restrained.

Read more about the findings

Read the report

 

Disability Discrimination in Schools

The United States Supreme Court said it will hear the case known as A.J.T. v. Osseo Area Schools. At issue is whether students with disabilities must show that schools acted in “bad faith or gross misjudgment” to claim that their rights were violated under the Americans with Disabilities Act or Section 504 of the Rehabilitation Act. The plaintiff’s petition states, “As a general matter, plaintiffs suing under Title II of the ADA and Section 504 of the Rehabilitation Act can obtain injunctive relief without proving intentional disability discrimination, and they can recover compensatory damages by proving that the defendant was deliberately indifferent to their federally protected rights. But the Eighth Circuit and four other circuits have erected a more stringent test for children with disabilities who face discrimination in the school setting.”

Get more information

The U.S. Department of Education lifted the freeze on investigating discrimination complaints at schools and colleges across the country to allow disability investigations to proceed.

 

Off-Loading Special Education

The President has pledged to shutter the U.S. Department of Education, saying that he wants the Secretary of Education to “put herself out of a job.” During her confirmation hearing, the newly seated Secretary repeatedly suggested that oversight of the Individuals with Disabilities Education Act ought to be moved outside of the Education Department, specifically to the U.S. Department of Health and Human Services. The U.S. Department of Education sends billions in federal funding for special education, early intervention, and vocational rehabilitation. The agency is also charged with ensuring that the civil rights of students with disabilities are protected.

More on the Education Secretary

More on the President’s plans for the Department

An opinion from The Arc of the U.S.

Issues already exist between special education funding from the federal government and its original commitment when the Individuals with Disabilities Education Act was enacted. This commitment was for the 40 percent of special education costs per pupil, but only once has the federal government provided even 20 percent.

 

Executive Commission

The new administration has launched a Make America Healthy Again Commission which will study the childhood chronic disease crisis and causes. The executive order mentions autism in this, and some advocate organizations have trepidation or have spoken out against the commission. For one thing they are upset that the order classifies autism as a chronic disease and worry about past statements that the chair of the commission, HHS Secretary Robert Kennedy Jr has made about the causes of autism. Others hope such efforts to study autism will help clarify that immunizations do not cause autism for RFK Jr and others in his ideological spectrum.

Learn more about the Commission

Commission Concerns

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Legislation Introduced Affecting Waivers

House Resolution 10 from Representative Melissa Cerrato would create a study on how to improve home and community-based waivers. The resolution was assigned to the House Human Services Committee.

House Bill 268 from Representative Liz Hanbidge would require HCBS waiver benefits to be received no later than 90 days after eligibility for Medicaid. The bill was assigned to the House Human Services Committee.

Legislation Introduced Affecting Guardianship

House Bill 18 from Representative Jeff Olsommer would require courts to hold a hearing within 30 days of receipt of a petition to modify or terminate a guardianship for an incapacitated individual. The bill was assigned to the House Judiciary Committee.

Legislation Introduced Affecting Services

House Resolution 44 from Representative Carol Hill-Evans would recognize March as National Social Worker’s Month. This resolution was reported out of the House Professional Licensure Committee with a vote of 26-0. It awaits a vote on the House floor.

House Bill 66 from Representative Kristine Howard would help relieve social worker shortages by creating the Social Worker Educational Enrollment and Training Stipend Program. This bill was assigned to the House Human Services Committee.

House Bill 194 from Representative Joe Ciresi would a student loan forgiveness program specifically for students seeking undergraduate or master’s degrees in the fields of psychology, counseling, social work, human services work, psychiatry, and nursing. The bill was assigned to the House Human Services Committee.

House Bill 195 from Representative Joe Ciresi would establish the Mental Health Workforce Retention Program to provide grants to eligible mental health workers who have been employed in the field focusing on adolescents for at least seven consecutive years and are residents of Pennsylvania. The bill was assigned to the House Human Services Committee.

House Bill 482 from Representative Brandon Markosek would increase access to occupational therapy in Pennsylvania by having the state join the National Occupational Therapy Licensure Compact. This bill was assigned to the House Professional Licensure Committee.

House Bill 700 from Representative Kerry Benninghoff would recognize the whole breadth of savings from closing the state centers, including avoided maintenance costs, upkeep, and operational costs that would otherwise have been expended for the state center. Then, the total savings would be appropriated from the highest fiscal year and redirected to the waitlist. This bill was assigned to the House Appropriations Committee.

House Bill 711 from Representative Sheryl Delozier would exempt community homes for adults with disabilities from sprinkler requirements in the construction code.  This bill was assigned to the House Housing and Community Development Committee.

 

Legislation Introduced Affecting Education

House Bill 192 from Representative Manuel Guzman would require more school counselors, psychologists, social workers, and nurses based upon school population. This bill was assigned to the House Education Committee.

House Bill 455 from Representative Carol Hill-Evans would create the Building a Better Future Grant Program for students ages 16-24 to organizations who provide trade workforce development skills as an alternative education program, which includes students who have been marginalized from other education opportunities. Students the organization enrolls must be from a low-income family and meet two other criterion which include disabilities and foundational skills or basic-skills deficiency. This bill was assigned to the House Labor and Industry Committee.

Senate Bill 139 from Senator David Argall, also known as Roman’s Law, would allow for delayed school enrollment for children with IDD. The bill was assigned to the Senate Education Committee.

Senate Bill 354 from Senator Rosemary Brown would direct tuition payments to the same formula that is paid to school districts to educate a student rather than an assumed amount per special education student. The bill was assigned to the Senate Education Committee.

Legislation Introduced Affecting Transportation

House Resolution 68 from Representative James Struzzi II would establish a study on rural mass and public transportation. The resolution was assigned to the House Transportation Committee.

Legislation Introduced Affecting Screening

House Bill 74 from Representative Brian Smith would require licensed childcare providers to be provided with an autism screening tool and information on resources. The providers may present the information to a parent and assist with the use of the tool upon request. Neither the childcare provider nor the parent would be required to use the screening tool. This bill was assigned to the House Human Services Committee.

Legislation Introduced Affecting Health

House Bill 83 from Representative Barbara Gleim would increase the age of minor consent to treat for medical, dental and mental health from 14 years of age to 16 years of age. In addition, the legislation would also have an exemption for special needs individuals who may not be capable of making important medical decisions on their own without parental guidance. This bill was assigned to the House Health Committee.

House Bill 110 from Representative Stephanie Borowicz would ensure parental consent for a child’s medical, dental and mental health treatment is maintained until the child is a legal adult at 18 years of age. This bill was assigned to the House Health Committee.

House Bill 111 from Representative Gina Curry, also known as Lloyd’s Law, would prohibit discrimination in life insurance policies based on prescribed opioid reversal agents. This bill was reported from the House Insurance Committee 26-0 and is now assigned to the House Appropriations Committee.

House Bill 200 from Representative Dan Miller, also known as the Family Care Act, would create a statewide paid family and medical leave insurance program. This bill was assigned ot the House Labor and Industry Committee.

House Bill 211 from Representative Perry Warren and House Bill 261 from Representative Tina Pickett would remove the terms handicapped and mental retardation from the state’s insurance laws and replace those terms with disability and intellectual disability. Both bills passed the House 202-0 and are now assigned to the Senate Banking and Insurance Committee.

House Bill 656 from Representative Jamie Barton would provide for training of non-medical school personnel for the administration of emergency seizure treatment in schools. This bill was assigned to the House Education Committee.

Legislation Introduced Affecting Protections

House Bill 116 from Representative James Struzzi II, also known as Cody’s Law would create the crime of aggravated assault on individuals with an intellectual disability or autism, as a felony penalty. This bill was assigned to the House Judiciary Committee.

House Bill 434 from Representative Gina Curry would create the Ebony Alert System to establish an alert system for missing or abducted individuals who are a person of color between ages 12 and 25 and are either developmentally, cognitively, or physically disabled, and/or missing under a circumstance that indicates endangerment. This bill was assigned to the House Children and Youth Committee.

House Bill 517 from Representative Clint Owlett would allow for an optional notation of autism diagnosis on driver’s licenses and ID cards. This bill was assigned to the House Transportation Committee.

House Bill 802 from Representative Liz Hanbidge would exempt disability accommodations from the Right-to-Know Law. This bill was assigned to the House Intergovernmental Affairs and Operations Committee.

House Bill 808 from Representative Roman Kozak, also known as Nicholas’ Law, would remove the statute of limitations for certain crimes against a care-dependent person. This bill was assigned to the House Judiciary Committee

Senate Bill 307 from Senator Wayne Fontana would create the Purple Alert System based upon the Amber Alert System but specific for individuals with intellectual disabilities. This bill was assigned to the Senate Law and Justice Committee.

Legislation Introduced Affecting Accessibility

House Bill 267 from Representative Liz Hanbidge would allow an election official to bring a paper ballot – or portable voting machine when available – to any voter outside the physical polling place who has a physical, emotional, intellectual, developmental disability, or short-term inability that would preclude them from easily accessing a voting machine. This bill was assigned to the House State Government Committee.

House Bill 307 from Representative Brian Munroe would increase the width of access aisles for accessible parking spaces. This bill was assigned to the House Housing and Community Development Committee.

House Bill 358 from Representative Brian Munroe would require at least two elevators in new multi-story residential buildings. This bill was assigned to the House Housing and Community Development Committee.

House Bill 410 from Representative Jennifer O’Mara would allow individuals with disabilities to renew their driver’s licenses and ID cards with information on file at PennDOT as opposed to having to renew in person at a licensing center. This bill was reported out of the House Transportation Committee 26-0 and is currently Tabled with the Speaker.

House Bill 485 from Representative Brandon Markosek would require that public entities with digital content ensure content is available to people with disabilities. This bill was assigned to the House Communications and Technology Committee.

House Bill 534 from Representative Brandon Markosek would require the Department of State to provide special absentee ballots printed in braille to qualified voters who submit a written request for a special ballot. This bill was assigned to the House State Government Committee.

House Bill 824 from Representative Tarik Khan would prioritize park and recreational construction projects that improve inclusion of children with disabilities in state grant funding. This bill was assigned to the House Tourism, Recreation, and Economic Development Committee.

House Bill 826 from Representative Tarik Khan, also called Michael’s Law, would require public accommodations to waive admission fees for personal care attendants whose attendance is necessary to enable individuals who require care to attend events. This bill was assigned to the House Tourism, Recreation, and Economic Development Committee.

Legislation Introduced Affecting Employment

House Bill 382 from Representative Jason Ortitay would require a hiring program for individuals with disabilities for employers receiving state tax credits. This bill was assigned to the House Labor and Industry Committee.

House Bill 487 from Representative Tarik Khan would prohibit the subminimum wage for Pennsylvanians with disabilities in state contracts. This bill was assigned to the House State Government Committee.

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THE ARC OF PENNSYLVANIA PIE STAFF:

Sherri Landis

Alexa Brill

James Sawor

CONSULTANTS:

Vini Portzline

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