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

• n Disability

National Association of Developmental Disability Councils

FISP Family Advisory Panel Members

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

• f 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…

50,000 100,000 150,000 200,000 250,000 1950 1955 1960 1965 1970 1975 1980 1985 1990 1995 2000 2005 2010

Average Daily Population Year

People with ID/DD in Large Public Residential Facilities

ID/DD Psychiatric

The ICF-MR Era

92,498 107,081 88,424 71,279 54,636 43,530 36,093 30,481 11,958 23,686 32,398 33,707 28,181 25,281 20,432 17,829 356 1,627 2,874 6,366 1,264 1,013 1,091 1,083 1,354 8,358 20,654 34,908 43,880 40,748 38,811 38,164

20,000 40,000 60,000 80,000 100,000 120,000 140,000 160,000 1977 1982 1987 1992 1997 2002 2007 2010 Residents Year

People with ID/DD living in ICF-MR Settings 1977 to 2010

Nonstate 1-15 State 1-15 Nonstate 16+ State 16+

HCBS Explosion

• 100,000

200,000 300,000 400,000 500,000 600,000 700,000

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

Medicaid Home and Community Based Waiver Recipients with ID/DD 1982 to 2010

The Rest of the Story

Other (1.9%), 19,710 Host Family/Foster Care (3.8%), 40,060 Own Home (12.0%), 127,455 Congregate Care (26.4%), 279,584 Family Home (55.9%), 592,180

People with ID/DD

Other (1%), 8,147 Host Family/ Foster (4%), 27,895 Own Home (12%), 93,672 Congregate Care (7%), 57,198 Family Home (76%), 592,180

Number of Settings

Changes in RISP Data Reporting

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

Changes in RISP Data Reporting

In 1992 data for HCBS residential type was aggregated and relatively unsuable for decision makers and advocates. Today, however, data is collected and reported by state. Further,

• perational definitions

have been developed to increase the reliability

• f the data.

RISP Data Example

163,022 34,541 93,036 286,061 15,410

• 50,000

100,000 150,000 200,000 250,000 300,000 350,000 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010

HCBS Recipients with ID/DD by Reported Type of Residential Setting (2000-2010)

Residential Facility Host/Foster Home Person's Own Home Family Home Other Setting

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 Support to find this site.)