The Positive Effects of a Self-Directed Support Corporation:
The Terrapin House Story
Medicaid is the only health insurance program (public or private) that helps people with intellectual, developmental or physical disabilities live more independently in their homes and communities. However, the variety of services and supports can be extremely confusing and overwhelming to families. PHLP helps families understand their options in this maze of systems and services. In the case of a young autistic man, the best option was to form a Self-Directed Support Corporation, also known as a Microboard.
Lisa Sportelli’s son, Ean, is autistic and non-verbal coupled with complex medical and behavioral health care needs. Lisa began working with PHLP 15 years ago when Ean was just 3 years old. PHLP initially helped Ean receive Medicaid funded mental health behavior supports known as “BHRS” or “wraparound”. PHLP also helped the family obtain much needed Intellectual Disability Waiver Services such as speech, Occupational Therapy, home adaptations, and In-Home and Community Supports.
Unfortunately, those behavior services were not effective and Ean’s behaviors escalated to severe levels. Desperate to find a treatment program that would work for Ean, Lisa arranged to have him extensively evaluated at Kennedy Krieger, Neurobehavioral Unit (NBU) in Maryland. Kennedy Krieger developed a tailored Applied Behavior Analysis (ABA)-based treatment program for Ean and his behaviors decreased dramatically while at the NBU (Ean was discharged with a remarkable 96.2% reduction in behaviors). Lisa wanted to make sure the services NBU provided could be continued when Ean returned home. Ean received his first ABA treatment plan, which included very specific protocols, a Behavioral Intervention Plan as well as a Crisis Intervention Plan that included physical management for episodes of self-injurious behaviors, property destruction, and aggression towards others that could not be deescalated through other means. Unlicensed waiver services could no longer meet his needs and these new protocols required Lisa to search for and contract with a provider agency; however, none of the provider agencies could produce the promises made of the supports necessary to implement the new effective treatment plans. After five failed attempts, Lisa needed to take an extraordinary step: create her own provider agency, a Self-Directed Support Corporation, so she could ensure Ean’s prescribed ABA program would continue to be provided with fidelity.
With the help of PHLP, Lisa and her father formed a Self-Directed Support Corporation, Terrapin House, Inc., which is run by a Board of Directors comprised of friends and family committed to Ean. Most importantly, Ean has staff 24/7 that has been trained by a Board Certified Behavioral Analyst in Ean’s ABA program and safety protocols. The staff is overseen by and accountable to the CEO and Program Specialist who were chosen by the Board. Staffing costs and housing expenses are now funded through a Medicaid waiver (known as the Consolidated Waiver). The Self-Directed Support Corporation controls the hiring, training, scheduling and, if necessary, firing of staff which enables Terrapin House, Inc. to be sure Ean continues to make progress in his Individualized Support Plan (ISP) outcomes and goals. This model also makes it easier to integrate Ean’s behavioral supports with his home and community supports while also meeting his complex medical needs.
While advocating for Ean and creating a Self-Directed Support Corporation, Lisa and her father also worked with the team as well as an architect and contractors to design and construct a custom home for Ean. Every room helps Ean function independently: the kitchen is gluten free/casein free equipped with safety turn off switches for the oven and water; there is protective Lexan coverings on all windows and televisions; the walls were all reinforced; the bathroom is designed with extra drains so it cannot flood and the water temperature and usage can be controlled from outside of the shower to promote the highest level of independence; there is a learning room that allows Ean to focus without distraction; and visual charts and instructions are in every room of the home to help Ean complete all activities of daily living as independently as possible.
The main feature of the home is the sensory living room, which is equipped with mirrors, a trampoline, and an adapted suspension swing to address Ean’s sensory diet of appropriate vestibular and proprioceptive input. Lisa says the house and the services that have been provided through the Self-Directed Support Corporation are consistent with “The principles of EveryDay Lives promoted through Department of Human Services, Office of Developmental Programs.”
With PHLP’s help, Lisa was able to find a unique way to obtain the help her son needs to thrive in his own home. PHLP has assisted 4 other families with developing operational Self-Directed Support Corporations for their family members as well as assisting several others in developing different participant and family directed housing and support models.
Terrapin House would like to thank David Gates and PHLP for all the assistance they have provided. To read more about PHLP or to donate click here.
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