NYAPRS Note: NYAPRS has long regarded self-directed care as the most transformative system reform that currently exists, as it shift the focus and control and use of public dollars to support individuals to overcome past barriers and to thrive in lives of choice.
We’ve been very excited and as proud of New York’s groundbreaking efforts here as we are of the pioneering efforts of NYAPRS member agencies and pilot sites Community Access in NYC and Independent Living in the Hudson Valley. See the attached newly released reports and see below for some key highlights.
Great thanks are due to the extraordinary efforts of Bevin Croft and the folks at Human Services Research Institute and of Don Zalucki and Bob Myers at the NYS Office of Mental Health and the support of the NYS Department of Health. We look forward to the development of additional sites in NY and the program’s transition to the Home and Community Based Services program.
Learn a lot more about SDC and the terrific work HSRI is doing in this area at https://www.mentalhealthselfdirection.org/.
“Being voiceless in my own care perpetuated the idea that I was broken…Self-direction is changing that.” ~ SDC Participant
Since 2017, New York State has been implementing Mental Health Self-Directed Care using NYS Office of Mental Health (OMH) funds. It is being piloted as part of a Medicaid 1115 Waiver Demonstration, which is designed to help states test new approaches to service delivery for people on Medicaid.
Two new research briefs describe early findings from an evaluation of New York’s Self-Directed Care pilot. The first brief describes the implementation of the program, which began in 2017 and is being piloted as part of the State’s Medicaid 1115 Waiver Demonstration. It provides information on the project timeline, participant characteristics, goals and purchases, and implementation lessons from the early days of the program. The second brief covers preliminary findings from the outcomes evaluation, which examined participant-reported quality of life outcomes before and after self-direction.
“The opportunity to practice self-care…like acupuncture…trying to put together an outfit to go on an interview…to build a business…this has given me a great deal of hope.” ~ SDC Participant
Self-Directed Care is about autonomy and choice. It’s based on the idea that people are experts in their lives and should determine their own recovery pathways. With Self-Directed Care, people use public funds to purchase goods and services or hire service providers. All purchases are linked to specific recovery goals set by the person with support from a specially trained advisor.
Since 2017, New York State has been implementing Mental Health Self-Directed Care (SDC) using NYS Office of Mental Health funds. It is being piloted as part of a Medicaid 1115 Waiver Demonstration, which is designed to help states test new approaches to service delivery for people on Medicaid.
To take part in the SDC pilot, people had to be eligible for Medicaid Health and Recovery Plans (HARPs). These plans are designed for people with significant behavioral health needs. The SDC pilots are taking place in two sites: New York City with Community Access, Inc. and the Hudson Valley region with Independent Living, Inc.
Participants
As of May 2019, 219 participants were enrolled in SDC. Participants were:
• Between the ages of 23 and 66; average age of 45
• 50% female
• 50% white, 40% black, 18% Hispanic
Participants experienced a high level of financial need and often lacked social supports.
· 42% held a high school diploma or equivalent
· 40% lived in supportive housing and 13% had unstable housing or experienced homelessness
· 19% were employed (mostly part-time)
· Many participants reported substance use disorders, physical health problems, and histories of trauma
· On average, participants rated their quality of life as just above “fair”.
Many participants reported substance use disorders, physical health problems, and histories of trauma.
Every quarter, participants and SDC staff completed an assessment of their quality of life. After 3 months we saw a significant increase in self-esteem and access to transportation. After 6 months, we saw significant improvements in seven quality of life domains:
· involvement in work
· access to transportation
· participation in community activities
· personal relationships
· ability to have fun and relax
· independence
· self-esteem
Participant ratings of overall quality of life were also significantly higher after 6 months in SDC. People also reported improvements in day-to-day factors— sometimes called the social determinants of health:
· 10% increase in the number of people involved in educational activities
· 11% increase in the number of people in stable housing
· Significant decreases in financial difficulties associated with utilities, transportation, and healthcare
Goals & Purchases
Based on level of need, 37% of participants were eligible to spend up to $8,000 per year, and 63% could spend up to $16,000 per year. Yet during this first year, participants spent only 40% of the allotted amounts. As shown below, through their purchases, participants pursued fitness and good nutrition, better living environments, more social connection, and engagement in meaningful and joyful activities (see pie chart below).
Next Steps
The pilot will continue through 2021. If the pilot is successful, SDC will transition from a state-funded to a Medicaid-funded program. The state will also expand the number of SDC sites to other regions in the state and involve Managed Care Organizations in the expansion effort. It will also work with MCOs to create a plan for fiscal management. An additional independent evaluation will examine these expanded pilot activities. Once that evaluation is complete, OMH will decide whether and how to make SDC a statewide program.