The struggle is real

AVON PARK — Gov. Ron DeSantis and Florida Legislators took the time to listen and understand the direct care worker crisis in the 2022 Legislative session. This was a vital first step in ensuring that Ridge Area Arc can continue to provide programs that promote choice and independence for individuals with intellectual and developmental disabilities.

The governor has been supportive of our industry and – more importantly – the people we serve. For that, we are grateful. However, community-based programs like ours that support the neediest Floridians have faced significant financial challenges in recent years.

We still need help as we are experiencing unprecedented increases in gasoline, health insurance, business insurance, and other non-wage operational costs which threaten our service delivery.

Since 2021, many facilities have been forced to close due to financial constraints. Organizations like ours have been unable to find staff, while our administrative costs and overhead expenses have remained high.

It's essential to understand that adequately financing non-wage services for these programs could become a serious problem if not addressed. Without sufficient funding, it's challenging to keep these programs running and provide quality care for the people we serve.

A recent survey conducted by Florida ARF and The Arc of Florida for the 2023 session showed that 85% of providers could not cover all program costs despite the direct service provider wage mandate and inflationary cost rate increase.

There are more than 22,000 people with developmental disabilities in Florida waiting for Medicaid waiver services.

Ridge Area Arc's Betty Rowland is a single parent of a 24-year-old woman on the Medicaid waiver waiting list. The Medicaid waiver program ensures that persons with disabilities are afforded rights to participate in society without barriers, live in their least restrictive environment, and receive services in their community to avoid institutionalization.

Bethany has Down syndrome and several health issues and in order to care for Bethany, Rowland relies on direct support professionals. Rowland's goals are not much different than yours – she wants her daughter to be a person who can function to the best of her ability in society, be productive, contribute, form meaningful relationships, and remain safe and healthy. In order to accomplish this, she needs help. Bethany is in danger of being isolated because she is not able to participate in society without the assistance of other people. These are not just people who "babysit" her. Aside from supervision for safety purposes, these are people who are instrumental in the achievement of her goals as a person with a disability.

Rowland works full time as a teacher at Ridge Area Arc and privately pays for Bethany to attend Arc's Adult Day Training program one day a week. For 34 hours a week, Bethany spends time with a support professional paid for through a medical trust.

In order to ensure her daughter's health, safety, community inclusion, and participation in activities to achieve goals, Rowland relies on support professionals. Rowland would not be able to go to work and without them, Bethany would be unable to go out of her home, to work on her goals, to socialize, participate in the community, stay clean and healthy, and remain safe. These are not small things. Bethany's quality of life depends upon having a support professional.

In order to protect those we serve, the following should be taken into consideration starting in July:

The American Rescue Plan, which provided an additional FMAP match for home and community-based providers, will end. This was used primarily in the form of bonuses to recruit and retain the workforce serving individuals with intellectual and developmental disabilities.

The Centers for Medicare and Medicaid Services allowed states to file an Appendix K at the start of COVID. The provisions in Florida's Appendix K relaxed staff-to-client ratios without compromising safety, but these provisions will end and impact the capacity to serve clients.

Staff serving individuals with intellectual and developmental disabilities won't be able to be compensated at the same levels as other Floridians in the workforce. As a result, the strides we made last year will be diminished and disrupt services for this most vulnerable population.

In order to serve more individuals with intellectual and developmental disabilities we have to solve our staffing crisis. Our vacancies are still high, and our employees will be depending on increases to match other sectors. This fall our staff will be expecting a raise and minimum wage will go up another dollar.

All of these compounding scenarios will likely mean that if no action is taken there will be fewer services available in the community for those with intellectual and developmental disabilities.

Despite these challenges, Ridge Area Arc remains dedicated to providing the support and services that will allow individuals with intellectual and developmental disabilities to live full and independent lives. We want to enable everyone we serve to have a life of true choice.