1. 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 -

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

3. 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

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

5. 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

6. 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

7. 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%

8. 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.

9. 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)

10. Results: Living Situation
The results of the study indicated that

11. 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

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

13. 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.

14. 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)

15. 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.

16. 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”

17. 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

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

19. Questions? Contact Robin Greenfield, PhD rgreen@uidaho.edu
Richelle Tierney
CDHD, University of Idaho