Independent Living Resources for Individuals with Epilepsy Presentation to the Institute of Medicine Rebecca Rubin, LCSW-C Director of Programs
HISTORY Founded in 1982 Today there are 22 homes plus one rental apartment that support 106 residents 20 in Montgomery County, 3 in Reston Additional 65 individuals supported in their own homes throughout the Greater Washington Metropolitan area July 2008, opened MOST, Meaningful Opportunities for Successful Transitions In Rockville, serve up to 15 at one time Planning to open Fairfax County program in July 2011 following similar model
Who is a JFGH Client? Individuals with a wide range of disabilities Intellectual Disabilities Developmental Disabilities Significant Learning Disabilities Chronic Mental Illness Epilepsy Traumatic Brain Injuries Occurred prior to age 21 Or minor to moderate impairment in adulthood With or without medical and/or physical comorbidities
Services Residential Supports: Group Home, Community Supported Living Arrangement The goal is to provide the supports necessary to promote an individual s achieving personal goals and lifestyle Personal assistance, Supervision, minimal medical assitance as needed Drop-Supports: Individual Support Services Organizational, financial, health/wellness, nutritional Social/Recreational Opportunities: Promote active engagement in community resources Promote active participation in faith community of individuals choices Promote socialization beyond JFGH
MOST Meaningful Opportunities for Successful Transitions One year individualized post-educational transition program For individuals transitioning out of school system or who are not successful in their current day programming. Focuses on three areas: Self-Sufficiency Community Inclusion Pre-Vocational Planning In Fourth Year of Program: All Transitioners have found daytime activities, jobs, programs within one year Several have been placed in programs with fewer supports than originally planned
Funding Sources Government Medicaid Waivers pay IDD in both MD and VA Medicaid Waiver pays DD in MD and is scheduled to include DD in July 2011 Private Families who choose to contract, may pay directly May use special needs trusts to fund portions not covered by government funds
Funding-continued Fees Group Home--Currently, $77,500/year All funded individuals make a personal contribution to care which is subtracted from the government payment Drop-in Supports, CSLA, IHS Fee for service ($25/hr)+ administrative fee for case management. MOST --$30,000 is base tuition Personal Needs Costs: recreational, transportation, personal care items, healthcare.
Current Initiatives Non-financial Long-Term Planning for clients and their families Family programming focused on preparing for long term advocacy, health-care proxies, agents, medical directives, etc. Aging in place Full time RN s (nurses) provide liaison and oversight of the medical needs of JFGH clients Regulatory mandates are unfunded, so the model in most community provider agencies provides for consulting nurses who review client medication and healthcare needs Improving health care literacy Staff training on end-of-life issues and provide for access to hospice as an option for families Retro-fitting homes to be accessible to individuals with different needs. Technology Support Using technology in lieu of personnel to ensure safety and welfare. Person Directed Planning/Community of Practice Developing supports as directed by the individual Facilitating Circles of Support to assist the individual with decision-making and the selection of supports.
Recommendations Affordable housing for those who choose to live independently in their own homes Affordable housing vouchers are available on a limited basis, and the timing once a voucher is received is limited for finding a home, moving in, and establishing the support services required for enabling the individual to live independently Alternative housing models that will facilitate making housing available for all who would like it Future Planning Providing opportunities for current families/advocates to learn about organizations that provide long-term advocacy alternatives. Regular Family/Advocate Meetings with Panels of Organizations and Providers Aging of individuals with intellectual and developmental disabilities Providing seniors with disabilities the same opportunities for retirement and aging in place as those who are not disabled Service Delivery Model that supports individuals at-home or in retirement programs.