This March (2022) marks 24 months of COVID’s profound impact on our communities and our lives! Individuals with intellectual and developmental disabilities (IDD) and autism and their families have experienced these same serious health and financial burdens, as well as facing additional barriers:
- Several thousand adults with IDD have had no or limited day services
- Transportation services have been significantly reduced
- Assistance directly to individuals or families was and is limited by present regulations or Medicaid waiver agreements
- An unprecedented direct support workforce shortage has stopped many transitions to adult services and across such services
- Youth in school and home face limited accommodations and support
FY23 Budget Requests & Amendment Language Needed
COVID has changed our world and our system of supports must change with it. Appropriate funding is key. But changes in regulations and waiver agreements are needed as well if we are to reach those currently unserved or inadequately served – which we estimate at a minimum of 5,000 people. Children with disabilities were prioritized for return to school, yet many adults with disabilities are still waiting.
The FY23 budget must address relief for families & individuals who need their lifeline supports while keeping a stable service system by maintaining and increasing DDS and MassHealth line items included in our chart below and adding language for transferability across line items and other flexibilities.
Rationale of FY23 Budget Requests & Amendment Language
- Transportation (5911-3000): We project 25% more capacity than Governor’s budget and need increased costs for drivers and program flexibilities and redesigns for individuals.
- Community Day/Employment (5920-2025): We project funding at 85% capacity of network rather than 60% estimated in Governor’s budget; even with this increase it does not consider the approximately 500 individuals who turned 22 years in 2021. Note Governor’s pre-COVID FY’2021 budget requested $253 Million.
- Technology (5920-2003): Increased funding for strategic marketing and outreach development to constituents, staff development & training, online Assistive Technology (AT) credentialing program, and AT and remote supports & monitoring pilot programs to targeted populations.
- Autism Waiver (5920-3010): Increased funding for COVID impact on early intervention and addressing behavioral health.
- Autism Omnibus-Adults (5920-3020): Additional funding to address serving 300 new adults.
- DESE DDS (5948-0012): Designating funds from 7061-0012 will help address those with challenging behaviors and provide daily living skills training and communication skills for older youth at risk for out-of-home placement, which will serve 40 more youth.
Addressing utilization and unserved families: If attendance at day/employment and transportation services does NOT reach projected levels, it is essential that the funds be flexible and transferable to adults at home with family or residential programs for those being served. A conservative estimate of 5,000 people (many with complex medical and behavioral challenges) are NOT being served who were served prior to the COVID pandemic. This doesn’t include any of the estimated 3,000 Turning 22 graduates between March 2020, and June 30, 2022.
- Adjust language for DDS and MassHealth Line Items to increase transparency and flexibility to stabilize the network of services and permit shifting of funding for support services to individuals living with family or other settings if/when delays in congregate care continue:
- DDS Line Item (5911-1003), In line 2, replace “provided, that the commissioner of developmental services may transfer funds between items 5920-2025, 5920-2000, and 5911-2000” with “provided, that the commissioner of developmental services may transfer funds between items 5920-2025, 5920-2000, 5911- 2000 and 5920-3000.”
- DDS Line Item (5911-1003), In line 6, add “and provided further that the department of developmental services will revise regulations to allow flexible use of funding for support including goods and services for individuals not receiving adequate congregate day services including payment to responsible parties; and provided further, that the department will assist MassHealth in amending federal reimbursement agreements to maximize revenue and effectively serve adults in the least restrictive setting.”
- MassHealth Line Item (4000-0300), In line 3 “provided further that MassHealth will revise regulations to authorize flexible use of funding for support including goods and services for individuals not able to attend congregate day services such as day habilitation including funds to responsible parties; and, provided further, that MassHealth amend federal reimbursement agreements to maximize revenue and effectively serve adults in the least restrictive setting.
- Include language in MassHealth Line Items to preserve Adult Foster Care (AFC) program facing
workforce shortage and burnt-out caregivers. AFC caregivers did not receive any emergency relief during the pandemic such as “hazard pay,” interim increases in stipends, or other financial relief in recognition of the extraordinary efforts, burden, and personal risks these caregivers have endured. Given the workforce crisis, the 10% staff rate increases from the American Rescue Plan Act funding must be maintained. In addition, programmatic changes are necessary to identify and retain caregivers in this vital program that keeps families intact and individuals out of long-term care facilities such as permitting responsible parties (parents, guardians and spouses) to be paid AFC caregivers. Add to MassHealth Line Item 4000-0601, beginning on line 20:- “provided further that the rates effective for Adult foster care within MassHealth and MassHealth managed care entities on June 30, 2022 including the additional 10% shall continue and provided further that 90% of said 10% increase shall be directed toward staff related costs and caregiver payments.”
- “and provided further that MassHealth amend applicable regulations, by October 1, 2022, to permit spouses, legal guardians, and other legally responsible individuals to be qualified as caregivers.”
- “and provided further that the rates effective for day habilitation services within MassHealth and MassHealth managed care entities on June 30, 2022 including the additional 10% shall continue, and provided further that 90% of said 10% increase shall be directed toward staff related costs and caregiver payments, provided further that enhancements will continue until utilization of said program achieves 90%.”
We need to continue to support the needs & requests of these critical lifeline supports for our Daughter and other’s whom rely on continuing to receive all the supports needed in fulfillment of their daily lives.
Thank you for your powerful advocacy. The depth and breadth of your analysis of the state budget is remarkable. Without your expertise, the community of individuals with intellectual and developmental disabilities, their families and care providers would lack the power to advocate. Lucky to have you.