Voices of Adults with DD: Ensuring Person Centered Policy and Practice Robin Greenfield, PhD Richelle Tierney Center on Disabilities and Human Development, University of Idaho Welcome and introduction of session and presenters Agenda - Richelle and I will be talking about study that was conducted in Idaho from August 2015 – May 2016 with individuals receiving HCBS and Cathy will speak to the policy……. * At the end of the session we will be glad to answer any questions you might have for us * Get a sense of who is in audience -

Idaho To identify the perceptions of adults with DD * Choices Introduction Robin- Intro and purpose of study – Study conducted in Idaho from August 2015-2016 Purpose of study was …. To identify the perceptions of adults with DD * Choices * Integrated into community * Individual rights * Autonomy within a living setting

Research Questions Different living settings Different regions in Idaho Various levels of support/SIB-R Community access, employment and choice Robin There were four search questions which addressed how responses varied among …… SIB-R – Scales of Independent Behavior –Revised. Difference with this study which included a range of people on all support levels of SIB-R

Scales of Independent Behavior Revised (SIB-R) Pervasive Extensive Frequent Limited Intermittent Describe the levels of SIB-R

Design of Study Respondents (n = 112) Procedure Interview Protocol Data Analysis Design Respondents A random sample of 831 adults was drawn from a list from DH&W of 3200 receiving HCBS in the state of Idaho. Included adults from all 7 regions of Idaho Age range: 18 to 68 In total, 112 participated in the study (will address this number later) Initially called and interviewed

Respondents Urban is defined as counties that have a population center of at least 20,000 Rural counties have more than 7 people/sq mile and no population centers larger than 19,999 Frontier counties are defined as having less than 7 people/sq mile and no population centers larger than 19,999

Respondents 11% 47% 42% Living Status “Other, is defined as a person who was directing his or her own services utilizing the “My Voice, My Choice” program. 42%

Interview Response Levels How we determined response of each individual in the interview Due to the range of ways that individuals responded or were able to respond a coding system was developed to indicated how much of an interview was answered by the individual or by a support person.

Interview Protocol Living Situation (Questions 1-6) Individual Choice (Questions 7-13) Employment (Question 14) Integration into the Community (Question 15) Personalized Plan (Questions 16-20) 5 categories aligned with changes in HCBS Living Situation (Questions 1-6) Individual Choice (Questions 7-13) Employment (Question 14) Integration into the Community (Question 15) Personalized Plan (Questions 16-20)

Results: Living Situation The results of the study indicated that

Results: Individual Choice Important people – able to see. Time or distance barrier When to eat – generally times in SL/CFH when everyone else did-scheduled “snack” anytime – health issues What to eat – health concerns not noted on plan Choose clothes – weather appropriate Spend money – support – allowance TV-some restrictions bedtime, health not noted on plan

Results: Employment 72% UNEMPLOYED of those employed worked in sheltered workshop- cleaning and janitorial couple hours a week

Results: Integration into Community 83% made decisions of what to do each day Shopping Bowling Going to movies Going out to eat Integration into community-typical answers. Indiv made decisions on what to do each day typically working on a weekly schedule. Some limitations around time of activities and transportation or support not available at particular times.

Results: Personalized Plan 5 questions around PCP-Majority of individuals were familiar with their plan but not the term PCP. They attend the meeting but the responses of how the individuals participated varied from listening, being asked general yes/no questions, review of the year and what’s going to happening in the coming year. Strengths/abilities- out of the 112 only 1 individual asked about s/p was used in the pcp plan. Music Lack of understanding of why the question was asked and development of goals on the plan. Examples Strengths looked at as an update on performance of plan rather than reflecting the abilities that could be used to develop goals on a plan. (Pictures)

Research Questions In different living settings? In different regions of Idaho? At various levels of the SIB-R? RICHELLE LAST SLIDE How do responses vary: Interviewed 112 across the state. Asked 20 questions in 5 categories-probes Living Situation (Questions 1-6) Individual Choice (Questions 7-13) Employment (Question 14) Integration into the Community (Question 15) Personalized Plan (Questions 16-20) Results to the study questions 1. How do responses vary in different living settings? Of the 112 respondents interviewed we could not find any meaningful differences in responses to the interview questions given from individuals who lived in SL, CFH or other. 2. Again, there were no meaningful difference in responses among the respondents other than some access to community activities or types of community activities due to rural/frontier setting and these were very limited. 3. In the design of the study it was important to have a representation of all individuals receiving HCBS services across levels of the SIB-R. Early on it became apparent that the SIB-R score did not always correspond with an individual’s ability to be a participant in an interview. For example someone with a limited support score would not be able to respond independently or without support from someone else or there were some individuals with an extensive/pervasive support score due to physical needs were able to fully participate. We were unable to determine any variance based on the levels of the SIB-R.

Limitations Time Missing Data “Just another Socialist Program” Verification of Information Perception of Disability Each interview conducted in less than an hour (no time to confirm, observe, etc.) Unable to contact 18% of potential participants (n=831) Wary of researchers and the interview. CFH respondents “why do they need to know that?”, “We don’t want to participate in anything having to do with the DH&W any more than necessary”. Attitude may have impacted the validity of response The researchers did not have any access to any of the recipients' person centered plans and relied on the perceptions of the individual receiving services, a guardian, or a professional staff “Honey, that would be a waste of your time and mine”, or “She is at a three-year-old level” Focus on “disability”

Key Findings Adequate choice Restrictions were not listed on plans Individuals were NOT employed No reflection of strengths/interests Diversity NOT accommodated We were not asked to give recommendation from the report. This information was directed to department to guide quality assurance process. We hope that this will including the providers and individuals. There are opportunities within each category Choice- based on experiences Restrictions-limiting choices – food, tv or clothes Employment-perceptions PCP- discussions but not utilized in plan development PCP- planning process was similar across the study-gather information, ask questions, update goals-no accommodations to engage the range of indiv on how they process and understand information and communicate

Next Steps Idaho Department of Health and Welfare Idaho Council on Developmental Disabilities

Questions? Contact Robin Greenfield, PhD rgreen@uidaho.edu Richelle Tierney richellet@uidaho.edu CDHD, University of Idaho www.idahocdhd.org