People with Disabilities & Families Insuring Quality Services: Independent Monitoring for Quality (IM4Q) Guy Caruso, Ph.D., FAAIDD 9/8/2016 The Center for Disability Studies at the University of Iceland; National Association of Intellectual Disabilities; and the Department of Welfare at the City of Reykjavík

Pennsylvania’s University Center for Excellence in Developmental Disabilities Education, Research and Service

VISION A society where all people are valued and respected, and where all people have the knowledge, opportunity and power to improve their lives and the lives of others. MISSION The Institute on Disabilities leads by example, creating connections and promoting networks within and among communities so that people with disabilities are recognized as integral to the fabric of community life.

Pennsylvania (US)Pennsylvania (US) (119,283 km²) is 1.16 times as big as Iceland (103,000 km² or 13% larger than Iceland Population: Iceland 331,918 (July 2015 est.) Pennsylvania Million (2016 est.)Iceland Population:

Creation & Purpose of IM4Q In 1997, the State Office of Intellectual Disabilities Planning Advisory Committee recommended that Pennsylvania (PA) develop the capacity for independent monitoring IM4Q was designed to be conducted by people with intellectual disabilities, families, and other interested people, and not by professional staff IM4Q does not measure compliance with government regulations; instead it measures people’s quality of life outcomes Statewide and every County has an IM4Q Program

IM4Q Program Development Formal criteria to become an IM4Q program & selected by County and State Key elements are being independent (provide NO HARD services); have a board/advisory body; capacity to conduct program; follow protocol and guidelines in IM4Q Manual. Entities that are IM4Q Programs – Arcs (parent organizations), Centers for Independent Living, Mental Health Agencies Consumer Satisfaction Teams), University/Colleges, Self Advocacy Groups, & others (54 programs statewide)

IM4Q Sample (People to Interview) State provides sample of people to interview for each County for IM4Q Programs. Annually, IM4Q surveys approximately one-third of the people living in licensed residential settings in Pennsylvania (PA) Merged with National Core Indicators (NCI) in 2000; collect separate sample of individuals (may be living in licensed or unlicensed residential settings, with families or independently) Special samples – Transition, State Center, other

The IM4Q Survey Instrument – 7 Areas Covered *Satisfaction *Dignity, Respect, and Rights Choice and Control Relationships Inclusion Impressions of the IM4Q Team Family/Friend/Guardian Survey * Note: The first two sections can only be answered by the people themselves. Generally, between 44% and 63% of the people were able to respond in these sections

IM4Q Instrument & Interviewing Instrument merged with a national instrument as well and changes slightly over time Interviewers are selected by the IM4Q Program; screened for conflict; trained in interviewing and instrument use; paired for practice in the field; and paid Two interviewers for survey and must be combination of person with a disability, family member, student, interested other (not staff)

IM4Q Interview Instruments and Total Numbers Use a number of instruments – in State and national, both with person with disability and, family, & special (e.g. State Center, Transition) Since 2000 Grand total of 93,308 consumer interviews 6,158 consumer interviews in 2014 Since 2000 Grand total of 38,429 family surveys 2,600 family/friend/guardian interviews in 2014

The Three Groups Being Compared National data set that includes more than 14,000 records from 40 states National data collected in Pennsylvania, containing nearly 700 records IM4Q is the PA Independent Monitoring For Quality data set, containing more than 6,000 records

How IM4Q Works and Considerations The State selects a random sample of people receiving services and families each year to be interviewed by each IM4Q Program Local IM4Q teams interview people and families in the sample, and share their “considerations” with the County ID Program and/or State Center The sharing involves a data entry system for the state, county, supports coordinators & IM4Q Program to use for “tracking” and resolving considerations The County Program and/or other entity addresses IM4Q considerations in an on-line process called “closing the loop” (to be discussed)

Things to Remember About IM4Q Team Considerations Considerations are defined as a request or perceived request for change indicated by the consumer that might improve a person’s life while promoting discussion between their team members IM4Q team considerations may need further clarification and feedback from the Supports Coordinator (“Case Manager”) Some considerations may be issues people are already working on Some considerations may be beyond the capability of families, agencies and the counties to address quickly and a process for change is created (For example moving; getting a job)

How to Write Considerations Called a Consideration NOT Recommendation Considerations are taken directly from the consumer or family and are written as a factual request. Considerations taken from others may be written as well. We always indicate who is reporting the consideration and always use “may benefit”.

Considerations Taken Directly from the Consumer: Consumer stated he would like to go to more hockey games. Consumer indicated that she would like a pet. Consumer stated he would like a different job. Consumer stated he wants to move. Consumer stated he needs repair on his wheelchair.

Considerations Taken from Others: Family member stated that her daughter may benefit from learning how to use a computer. Guardian stated that the consumer may benefit from participating in more social events. Interviewers observed that consumer may benefit from spending more time with friends.

14 Consideration Themes 1. Adaptive Equipment 2. Communication Needs/Device/Services 3. Community Presence and Participation 4. Health/Well Being 5. Personal Rights, Competence Enhancement & Growth 6. Relationships/Friendships: 7. Residential/Living Situation Personal Change 8. Residential – Building Adaptations/Modifications 9. Safety 10. Service System 11. Spiritual Life 12. Transportation 13.Work/Employment/ Meaningful and Purposeful Activity 14. Miscellaneous:

Major Consideration Points There is No minimum number of considerations to be written There may be times when there are no considerations to report There is No limit to the number of considerations that you may write In , 6400 Considerations Developed

A Team May Discover a Major Concern Physical dangers within a residential site/home or place of community activity (e.g. broken stairs, plaster falling from the ceiling); Significant sanitation problems (e.g. plumbing problem, filthy environment, visible bug problems, rodent infestation); Evidence of physical abuse or neglect (e.g., unexplained bruises, poor dental care, and noticeable changes in weight); Evidence of psychological abuse (e.g. staff yelling at an individual, insulting language, restrictions placed on social activities); and Evidence of human rights violation (e.g., stealing of individual’s funds or property).

“Closing the Loop” Closing the Loop is the follow-up actions taken in the County ID program or other entities to address IM4Q findings and team considerations. Closing the Loop is how the County ID program uses the IM4Q results to improve the life of the individual receiving services as well as the service system as a whole The local IM4Q Team shares the considerations with the County Coordinator The IM4Q County Coordinator reviews the considerations with the Supports Coordination Supervisor

The Closing the Loop Process The person’s Supports Coordinator communicates and discusses considerations with the person and/or family to determine how to proceed Some considerations needing Team support are referred to the Team. Other considerations are addressed by the Supports Coordinator The IM4Q program’s role is to bring their considerations to the attention of the County ID Program and ensure that these are addressed to the satisfaction of the person/family The County is expected to notify the local IM4Q program regarding discussions and actions taken to address the considerations

IM4Q Data Reports for System Change Annual Statewide Summary Report and individual County Summary Reports containing aggregate findings. State Center report Transition report User-friendly IM4Q Summary Reports for individuals receiving services and their families are issued annually. The report contains a two sided page summary of aggregate County results from the Statewide and County IM4Q Summary Reports. IM4Q results are depicted in both graphic and iconic formats to facilitate individual and family understanding. National Reports as well

Consideration Follow-Up For 10 % of interviews in a County the IM4Q Program MUST do follow-up to hear from the person interviewed if the consideration was addressed to their satisfaction If NOT satisfied, then the consideration is written again and process begun to address it

Useful Demographics  Number of people interviewed a year  Number of families interviewed a year  Number of local IM4Q programs across the state  Number of IM4Q interviewers (paid)  Number of Board Members with disabilities  Approximately 6,158 children and adults  Approximately 3,400 families, friends, and guardians  54  Approximately 400  Approximately 245

How IM4Q Improves the Services System Provides information on individual satisfaction and outcomes from an independent source (peers/families) Serves as a safeguard by identifying “Major Concerns” affecting health and safety Helps to identify “promising practices” as well as areas needing improvement Provides a means for people to provide feedback and influence the quality of services and supports people receive in their community

State and Regional Level Participant Roles  State IM4Q Steering Committee  State IM4Q Management Committee  State and Regional State Coordinators  IM4Q Advisors  Advises State on IM4Q direction/priorities  Advises State on IM4Q operations  Manages IM4Q program  Provide advice/assistance to State, County & IM4Q program; data analysis and reports

Role of the Institute on Disabilities Provide 3 IM4Q Advisors to the program ( I am one) Instrument development and modification Training & Advice to IM4Q programs, Counties, State Liaison to national body regarding instrument/data/other Interview Data Analysis Report development - statewide, user-friendly reports, County, subsample reports [Transition, State Center] Develop and support Annual Statewide Training Conference Help to develop and implement Considerations Process that is part of a State Quality Management strategy

Five Recommendations from Reports People want to work and be self-sufficient People want greater influence on where they live and what they do during the day People want greater control over their resources People want to be included in their communities People want their homes and bedrooms to reflect their preferences and tastes

Benefits of IM4Q 1. Promoting Continuous Quality Improvement 2. Gathering Independent Information About Lives of People Served/Supported 3. Acting as a Safeguard Regarding “Major Concerns” for the People Served/Supported 4. Identifying Provider/System Promising Practices 5. Identifying Considerations for Change 6. Interviewing Families/Friends/Guardians about Service/Support Satisfaction 7.Collecting and Analyzing Consistent Data Sources 8. Developing and Disseminating Reports 9. Promoting Collaborative System Change

Questions?

Institute on Disabilities at Temple University 8500 Brooktree Road, Suite 100 Wexford, Pa Tel: Fax: Web: MY contact information: Guy Caruso, Ph.D., FAAIDD Western Coordinator Tel: