Family Information Systems Project (FISP) An ADD Project of - PowerPoint PPT Presentation

Family Information Systems Project (FISP) An ADD Project of National Significance Family Advisory Panel Meeting June 1, 2012

FISP Staff & Collaborators University of Minnesota: Project Officer: Institute on Community Integration: Katherine Cargill-Willis Sheryl Larson Collaborators: Amy Hewitt Family Advisory Panel Lynda Anderson Technical Users Group Human Services Research Institute: NASDDDS Research John Agosta Committee: including Linda Rolfe and John Martin (state directors) Kerri Melda Association of University Centers Jennifer Negus on Disability Drew Smith National Association of Developmental Disability Councils National Association of State Directors of Developmental Disability Services: Chas Moseley

FISP Family Advisory Panel Members Debbi Harris (MN) Kassiane Sibley (OR) Betsy MacMichael (NC) Emily Titon (RI) Angela Martin (MI) Rud Turnbull (KS) Pat Nobbie (GA) Betsy Valnes (DC) Julie Petty (AR) Jesús Villaseñor (MN) Lisa Pugh (WI) Kathryn Weit (OR) Michelle Reynolds (MO) Dana Yarborough (VA)

What is FISP? An annual data collection effort that produces accurate, reliable and comparable national and state-by-state data about family supports.

FISP Project Goals To collaborate with state DD agencies to identify the data elements and data definitions used to gather information from states to inform family support policy and practice nationally.  Bridge the gap between the type of information people want and the data that states can realistically provide. To collect and compile data annually from states .  Improve and expand the data set each year - as states improve their capacity to provide the information we seek.  Support state leaders to recognize the relevance and utility of the information they provide. To interpret the data and translate it into actionable information to assist policy makers and others to make informed decisions over family support policy and practice.  Conduct analyses that inform how the field is evolving, which will suggest additional data for us to collect. To disseminate our findings to state and federal policy makers, self-advocate and family advocacy groups, national organizations and all others interested in supports to families.  Success rests with implementing effective means for policy makers, families, individuals with IDD, and others to access the available information.

Focus of this Call To learn about the University of Minnesota’s RISP (Residential Information Systems Project), the “sister” effort to our FISP (Family Information Systems Project). To hear from State DD Directors about the data they do and don’t collect, and some of the challenges of data collection. To gain a better understanding of State’s capacity to provide the information we seek.

Updates Since Last Meeting Meeting with AIDD Gearing up for Survey to States E-mail exchanges among Panel members New Moodle platform for sharing information Decision to hold this webinar – better understanding of similarities between RISP & FISP efforts Similarities – data collection, how information collected and used Differences – long-standing vs. new effort, extent to which data target is clearly defined

History of RISP: Residential Information Systems Project RISP – From the Beginning Till Now: Where it Started and How Far it has Come Examples of RISP Data

In the beginning… People with ID/DD in Large Public Residential Facilities 250,000 ID/DD Psychiatric 200,000 Average Daily Population 150,000 100,000 50,000 0 1950 1955 1960 1965 1970 1975 1980 1985 1990 1995 2000 2005 2010 Year

The ICF-MR Era People with ID/DD living in ICF-MR Settings 1977 to 2010 160,000 Nonstate 1-15 State 1-15 140,000 8,358 Nonstate 16+ 20,654 1,627 34,908 State 16+ 2,874 120,000 23,686 1,354 6,366 43,880 356 32,398 100,000 11,958 Residents 40,748 33,707 1,264 80,000 38,811 1,013 28,181 38,164 60,000 25,281 1,091 107,081 1,083 92,498 20,432 88,424 40,000 17,829 71,279 54,636 43,530 20,000 36,093 30,481 0 1977 1982 1987 1992 1997 2002 2007 2010 Year

HCBS Explosion Medicaid Home and Community Based Waiver Recipients with ID/DD 1982 to 2010 700,000 600,000 500,000 400,000 300,000 200,000 100,000 - 1982 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

The Rest of the Story People with ID/DD Number of Settings Host Family/ Host Foster (4%), Family/Foster Other (1%), Other (1.9%), Care (3.8%), 27,895 8,147 19,710 40,060 Own Home Own Home (12%), 93,672 (12.0%), 127,455 Congregate Care (7%), 57,198 Family Home (76%), 592,180 Congregate Care (26.4%), Family Home 279,584 (55.9%), 592,180

Changes in RISP Data Reporting In 1992 13 States In 2010 0 States estimated the number of estimated the number of HCBS service recipients HCBS service recipients in their system. in their system.

Changes in RISP Data Reporting In 1992 data for HCBS residential type was aggregated and Today, however, data is relatively unsuable for collected and reported decision makers and by state. Further, advocates. operational definitions have been developed to increase the reliability of the data.

RISP Data Example 350,000 HCBS Recipients with ID/DD by Reported Type of Residential Setting (2000-2010) Residential Facility 300,000 286,061 Host/Foster Home 250,000 Person's Own Home Family Home 200,000 Other Setting 163,022 150,000 93,036 100,000 50,000 34,541 15,410 - 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

History of RISP: Residential Information Systems Project Usefulness of RISP data to State DD Directors Data Collection Challenges From UMN/RISP Team Perspective From State DD System Perspective Data definition State capacity to collect data Non-Medicaid services Funding sources State capacity to report data

Applying Lessons Learned from RISP Effort to FISP Effort Anticipated Challenges and Opportunities for Collecting Family Support Data Operational definitions Technology and data systems changes Managed Care Realistic Goals for FISP Data Collection: Year 1 - Year 5 – Year 10 – Year 20

Group Discussion Q & A

Contact Information Human Services Research Institute 7690 SW Mohawk Road Tualatin, OR 97062 503.924.3783 Family Information Systems Project Staff John Agosta jagosta@hsri.org Kerri Melda kmelda@hsri.org Jennifer Negus jnegus@hsri.org Drew Smith dsmith@hsri.org

University of MN Contact Information Sheryl Larson, 612.624.6024 larso072@umn.edu Amy Hewitt, 612-625-1098 hewit005@umn.edu Lynda Anderson 612-626-7220 ander447@umn.edu 214 Pattee Hall, 150 Pillsbury Drive SE Minneapolis, MN 55455 Project Collaboration website (once enrolled): https://moodle2.umn.edu/enrol/index.php?id=5876 (If you land on the U of MN Moodle general site, search on Family Suppor t to find this site.)