1. Health Access for Independent Living (HAIL ) Independent Living Specialist (ILS) Training
Jean Ann

2. HAIL Facilitator’s Guide
Research and Training Center on Independent Living (RTC/IL)
University of Kansas
HAIL Staff:
Jean Ann Summers, Ph.D.
Dot Nary, Ph.D.
Aruna Subramaniam, M.S.
Alice Zhang, M.Ed., M.A.
Val Renault, M.S.
Jean Ann
Funded by NIDILRR

3. Training Agenda Introduction and pre-test Session 1: What is HAIL?
Short break
Session 2: Implementation of HAIL- demonstration and practice
Discussion and post-test
Jean Ann

4. Introduction Independent Living movement rejected the medical model
Too many other battles to fight:
Housing
Transportation
Attendant care
Employment
Accommodations
Jean Ann

5. Introduction (cont’d)
Centers for Disease Control and Prevention (CDC) recognized importance of preventing secondary health conditions (early 1990s)
Healthy People 2010 includes objectives for people with disabilities (~1992)
World Health Organization (WHO) recognizes disability as a common human experience (~2000)
Surgeon General issues Call to Action to Improve the Health and Wellness of Persons with Disabilities (2005)
People with disabilities recognized as a group experiencing health disparities (2015)
Jean Ann*
RTC/IL booklets on secondary conditions
Designation as a health disparity group can result in allocation of funding, research and programs to address the problem.
There are 3 criteria for designating a health disparity group:
Differences in health outcomes at the population level
These differences are linked to a history of social, economic or environmental disadvantage,
Differences are regarded as avoidable

6. Needs Assessment Results
Surveyed Center for Independent Living (CIL) staff across the U.S.
182 responses representing 93 CILs across 33 states
Key findings:
Transportation reported as most frequent barrier to health care experienced (89% of respondents)
Depression was the most commonly reported chronic (83%) and secondary condition (89%)
CIL staff confirmed that consumers lack access to health promotion services and programs could use health promotion and prevention information.
Jean Ann Report available –will post on our website

7. Session 1
Jean Ann

8. What Is HAIL?
It’s a health management tool for people with mobility- related disability to address:
The role of depression, fatigue and pain, as barriers to community living and participation
The need for support to build consumer skills to access health care and manage their own health JA
Since CIL staff confirmed the need for a health promotion tool, we designed one called HAIL

9. Why These Three Secondary Conditions of Pain, Fatigue and Depression?
Often occur together
Are typically not visible so providers may be tempted to dismiss, or view as naturally occurring with a primary disability
Different solutions may work for different people
Jean Ann
1991 (institute of Medicine (IOM) report (pg 35 )defines secondary condition as: any additional physical or mental health condition that occurs as a result of having a primary disabling condition”
Secondary conditions we focus on are pain fatigue and depression as they are among the top health problems /conditions people face in addition to their mobility-related disability. As we said in the beginning, we chose these on the basis of a national needs assessment
We have collected a range of resources to address these conditions in our searchable database.
Our consumers can access information based on their individual needs related to these conditions

10. Goal Of HAIL
To develop a health management tool that supports CIL staff in assisting consumers to set and achieve short-term health goals to enhance independent living, so consumers can:
Experience fewer chronic condition complications, secondary conditions, and hospitalizations
Avoid institutionalization
Increase ability to participate in the community
Be more informed users of health care services
Jean Ann
Comments from reviewers: One reviewer commented that this program is “…..long overdue and gives more than enough information for centers( and consumers) to make an informed decision”
to aid CIL consumers with mobility-related disabilities manage their health

11. Why CILs?
CIL staff understand the health-related barriers that their consumers face
Consumers trust CIL staff
Jean Ann
HAIL was developed to support Independent Living Specialists or other CIL staff in providing health information and support to consumers as trusted sources

12. What Is Your Role As IL Specialist? Overview
Research component: data collected by HAIL staff
Intervention component
Start
Complete Forms with HAIL Staff
(Consent Form, Demographic From, Pre and Post Test)
HAIL Training
Assist Consumers
with Setting Goals
(See Flowchart for Consumers)
Finish
Help HAIL Staff
with Collecting Data
Aruna

13. What Are The Steps In This Project?
Attend the HAIL training
Help identify consumers who may be interested from your CIL
Assist consumers to access information on the website, either independently or with support
Assist consumers to select and achieve short term goals
Work with HAIL staff
Aruna

14. What Are the Components of the HAIL Program?
The HAIL website and database
Worksheets and supports for consumers to problem-solve and choose solutions to try
Research measures to assess impacts- conducted by the HAIL staff
Aruna

15. What Will You Find in this Guide?
Ways to navigate the searchable HAIL website
Consumer Support – HAIL Strategy to work with consumers
Aruna

16. HAIL Searchable Database
Information from evidence-based sources
General information that applies to everyone, plus information that targets people with physical disabilities
Alice
such as Webmd, CDC and other consumer advocacy organizations so that consumers need not sift through and make sense of the the vast information available on the internet .

17. Accessing health information should not be like trying to sip water
from a fire hose!
Alice

18. HAIL Searchable Website
Alice

19. Navigating the HAIL Website Home Page
Alice

20. Navigating the HAIL Website Home Page - Cont’d
In the home page you will be using the following links:
About
Finding Resources
Consumer Skills
Secondary Conditions
FAQ
Suggestion Box
IL Specialist Training
You may always come back to the home page at anytime to restart your search
Alice

21. Navigating the HAIL Website Finding Resources Page
Alice

22. Navigating the HAIL Website Finding Resources Page - Cont’d
This page has three sections:
Physical Disability: Click on the all the options that apply to you. Click N/A if none apply.
Secondary Health Conditions: Click on all the conditions for which you would like information. Click N/A if none of the conditions are relevant.
Health Solutions: Click on all the boxes for which you would like solutions. Click N/A if health solutions are not applicable to you.
You will need to select at least one option from each section
Alice
Clarify N/A can be chosen as an option, but cannot be chosen for each category—otherwise, no information will be identified.

23. Navigating the HAIL Website Consumer Skills Page
ALICE

24. Navigating the HAIL Website Consumer Skills Page-Cont’d
There are six fact sheets on Consumer Building Skills
Click on the one that best fits your needs
Alice

25. Navigating the HAIL Website Secondary Conditions Page
Alice

26. Navigating the HAIL Website Secondary Conditions Page
Fact sheets on three secondary conditions (pain, fatigue and depression)
Click on the one that best fits your needs
Alice

27. Navigating the HAIL Website FAQ Page
Alice

28. Navigating the HAIL Website Suggestion Box Page
Alice

29. Navigating the HAIL Website FAQ and Suggestion Box Page
You will find answers to some of your questions
If not, please use the Suggestion Box to your questions and comments to us. We will get back to you as soon as possible.
Alice

30. Navigating the HAIL Website IL Specialist Toolkit Page
Alice

31. Empowerment Through Health Management
The HAIL Intervention
Empowerment Through Health Management
Jean Ann

32. Phase 1 - HAIL Strategy for Working with Consumers
Phase 1 Identify Needs
Start: Meeting with Consumers
Check-in for Phase 1
Prioritize Needs to Find Solutions for Pain, Depression and Fatigue Using Finding Resources Checklist
Prioritize Needs on Consumer Skills Using Health Access Skills Building Checklist
Jean Ann
Conducted/collected by
HAIL staff
Conducted/collected by IL specialist
Proceed to Phase 2: Gather Resources
Completed by consumer

33. Phase 2 - HAIL Strategy for working with Consumers
Phase 2 Gather Resources
Download Relevant Fact Sheets for Skill Building
Download Resources for Identified Priority Needs
Decide Time Required for Consumers to Review Resources and Set Date to Proceed to Phase 3
Conducted/collected by HAIL staff
Conducted/collected by IL specialist
Check-in for Phase 2
Jean Ann
Did You Complete All the Steps in Phase 2?
If No
Completed by consumer
If Yes
Proceed to Phase 3: Develop Short Term Goals

34. Phase 3 - HAIL Strategy for working with Consumers
Phase 3 Develop Short Term Goals
Use GAS to Evaluate Goals Attained
Monitor Using Prompts (e.g., Text Message) and Check-in on Progress
Establish a Timeframe for Completion of Activities (about 2-4 Weeks)
Did You Complete All the Steps in Phase 3?
Finish!
Celebrate and Decide on Next Steps
Develop One or More Goals for Skill Building
Develop One or More Goals for Secondary Conditions
Determine Activities to Be Completed Based on Set Goals
Conducted/collected by HAIL staff
Conducted/collected
by IL specialist
Completed by consumer
Jean Ann
If No, Repeat Steps as Needed
If Yes

35. Session 2

36. Setting Goals
Jean Ann
Shawntell and the ILS meet after one week. After she has had a chance to look over the handouts .
Shawntell comes to the ILC to do step 3 of setting goals
When setting goals it’s important that the consumers to take small steps and be clear on prioritizing their activities needed to achieve their goals

37. Goal Attainment Scale (GAS)
Jean Ann
Instructions

38. What Is The GAS?
GAS is a way for consumers to set and achieve specific, short-term goals.
It is a way of defining a unique set of goals that
specify a range of outcomes
(b) specific activities that reflect those outcomes
Jean Ann
Kiresuk and Sherman developed Goal Attainment Scale (GAS) in 1968 within the mental health setting to not only help the consumer specify goals but also assess achieving of these goals. Other measures are based on somebody else’s judgment of whether the consumer has made progress.
We will get into how that’s done in the following slides

39. Why the GAS?
Useful way for the consumer to set specific goals that reflect his or her interests and priorities.
The goals attained are measurable and allow both the consumer and IL specialist to monitor the progress.
Jean Ann
With Goal Attainment Scaling, the consumer not only set the goals, they set the benchmarks by which to measure whether they make progress. So it is an empowering strategy.

40. How the GAS Works?
Each goal has a range of prescribed activities to be completed.
GAS is based on a 5 point scale (1 to 5). It is consumer-centered: the consumer’s needs and satisfaction are the main priorities.
The goals start with an expected level of achievement (baseline = 3) followed by 2 levels on either side of the baseline, depending on either falling short or exceeding the expected level of achievement.
Jean Ann

41. Using GAS to Translate Priorities into Action Steps
Choose relevant, challenging yet achievable steps.
Goals and the different levels are decided and discussed by the ILS and the consumer before pursuing the goal.
Goals should first determine the problem area(s) that need to be addressed.
Goals should quantify the behavior that needs to improve (target goal).
The number of goals set is generally from 2 to 4 depending on the consumer’s support system, motivation, time and resources available.
Jean Ann

42. Using GAS to Translate Priorities into Action Steps (Cont’d)
Consumer and the IL specialist should agree on a time frame to achieve the target goal.
The IL specialist should identify the support system available to achieve this goal.
Activities to achieve the goal within the five point scale should be determined approximately at equal intervals between all scale levels.
Only one variable should be changed so that the goal is measureable.
Jean Ann

43. Aruna

44. Guidelines for writing goals using GAS
Writing SMART goals:
Specific
Measurable
Achievable
Realistic/relevant
Time-based
Goals should be written in present tense
Aruna

45. Goal Setting
Aruna

46. Practice
Aruna

47. We Do It!
Aruna

48. Example Shawntell is 50 years old with Parkinson’s disease.
Has problems with walking
Has mood swings
Visits her local CIL
Aruna
Shawntell has been having a lot more tremors lately that inhibit her from walking around to do his daily chores. The doctor has suggested that she look into using a walker. She would like a walker but is unsure of what type she needs.
Shawntell often feels sad and unable to cope with her struggle with Parkinson’s. She is taking medications to control her tremors but wonders what else she can do to lift her spirits. She would like to try some non medical ways to address her sadness.
Shawntell visits the ILC to learn about walkers and find out more information on how to combat her mood swings.
As part of step 2 After speaking with Sheila, the IL specialist downloads fact sheets on Assistive Technology and Depression and Parkinson’s disease from the HAIL website. Sheila and the IL specialist decide to meet in one week to set goals after she has had a chance to look over the handouts.

49. Identify Priority Needs or “to-do” List with the ILS
PHASE 1
Identify Priority Needs or “to-do” List with the ILS
Prioritize needs for Consumer Skill Building
Prioritize needs for finding resources for Depression, Fatigue and Pain
Aruna

50. Identify Needs for Consumer skills
Aruna

51. Identify Needs for Finding Resources
Aruna

52. Shawntell’s Decision
Consumer Skills: Shawntell decides she would like more information on Assistive Technology and walkers.
Finding Resources: Shawntell decides she would like more information on depression.
Aruna

53. Phase 2 Gather Resources
Aruna

54. Website Resources for Consumer Skills
Assistive Technology
Aruna

55. Consumer Skill Fact Sheet for Shawntell
Aruna

56. Website Resources for Secondary Conditions
Aruna

57. Website Resources for Shawntell’s Depression
Finding Resources
Aruna

58. Shawntell finds Resources on Depression
Depression and anxiety:
Exercise eases symptoms
Aruna

59. Shawntell Gathers Resources
Download relevant fact sheet(s) for consumer skill building.
Download relevant resources and solutions for identified priority needs.
Provide time for consumer to review/discuss based on consumer’s needs.
Identify goals for ‘consumer skill building’ and ‘finding solutions’ based on resources reviewed.
Aruna

60. Phase 3 Setting goals
Aruna

61. Shawntell Sets Her Goals
Goal 1: Consumer Skill: Assistive Technology. “I learn about potential walkers I could use.”
Goal 2: Finding Resources for Depression. “I exercise as a way to relieve my depression.”
Time frame- 2 to 4 weeks
Aruna
How could this play out using the GAS

62. Goal 1 - Consumer Skill Building Assistive Technology
Aruna

63. Steps Involved In Writing Goals
The ILS and Consumer first determine the goal area and time frame. Example Goal Area: “I learn about potential walkers I could use.” Time Frame: 2 weeks
Aruna

64. Once the goal area is determined there are 4 steps to writing the goal
Define the expected (target) goal: What is the target activity (behavior) the consumer expects to accomplish given the time frame and support system available?
This would be a level ‘3’
Example:
Level 3 = ““I make a list of 3 types of walkers that would suit me.”
Aruna

65. Step 2
Determine the present condition of the consumer in relation to the targeted goal.
This would be level ‘1’
Example
Level 1= “I read the handouts but do not find out about walkers.”
Aruna

66. Step 3
Determine the specific activity (behavior) that the consumer might attain far exceeding the expected goal within the same time period.
This would be level ‘5’
Example
Level 5= “I write 2 pros and two cons for each of my selected walkers.”
Aruna

67. Step 4
Determine the intermediate levels in relation to the target goal.
This would be level ‘2 and 4’
Example
Level 2= “I check out the suggested website and learn what kind of walkers are available.”
Level 4= ““I write 1 pro and 1 con for each of my selected walkers.”
Aruna

68. STEPS IN WRITING GOAL 1 Goal Area:
I learn about potential walkers I could use.
STEP 1
Level 3 = I make a list of 3 types of walkers that would suit me.
STEP 2
Present condition related to target activity=1
I read the handouts but do not find out about walkers.
STEP 3
Activity that would exceed target activity=5
I choose one walker that best suits me.
Aruna
STEP 4
Activity between step 2 and 3=2;4
2= I check out suggested website and learn what kind of walkers are available.
4= I write 2 pros and two cons for each of my selected walkers.

69. Sample GAS goals for Shawntell
Level of Attainment
Goal 1 (I will learn about potential walkers I could use) 1
Much less than expected
(Present Level)
I do not find out anything about walkers. 2
Somewhat less than expected
(Progress)
I check out the suggested website, and learn what kind of walkers are available 3
Expected level of outcome
(Goal)
I make a list of 3 types of walkers that I think will suit me. 4
Somewhat more than expected
(Exceeds Goal)
I write 1 pro and 1 con for each of those walkers 5
Much more than expected
(Far Exceeds Goal)
I write 2 pros and 2 cons for each of those walkers
. Aruna
We have to remember that a 3 is the expected level of goal achievement for the time frame they agreed upon

70. Shawntell achieves Goal 1

71. Sample List of Walkers for Shawntell Score ‘3’- Expected Level
Single button adult folding Walker
Folding Walker with wheels
Rolling walker
Aruna

72. Pros and Cons for the Selected Walkers
(Score ‘5’- Shawntell Exceeds her goal)
Type of Walker
Pros
Cons
Single button adult folding Walker
Easy to fold
Cost $85
Doesn’t come with wheels
Needs to be lifted to move
Folding walker with wheels
Comes with wheels
Weighs 9 lbs
$128
Rolling Walker
Has Wheels and brakes
Has seat for comfort
$186
Weighs 14lbs
Aruna

73. Let’s Practice
Aruna

74. Goal 2 - Finding Resources for Depression
Shawntell exercises
Aruna

75. STEPS IN WRITING GOAL 2 Goal Area: I exercise to relieve my depression
Expected Target activity=3
I exercise 15 minutes a day 3 days a week
STEP 2
Present condition related to target activity= 1
I haven’t started any form of exercise as yet
STEP 3
Activity that would exceed target activity= 5
I exercise for 15 minutes a day for 5 days or more than a week
ARUNA
STEP 4
Activity between step 2 and 3=2; 4
2 = I exercise 15 minutes a day for 2 days or less a week
4 = I exercise 15 minutes a day for 4 days a week

76. HAIL Exercise Log
Aruna

77. You do it!
Aruna/Jean Ann ?Alice

78. Your Turn…
What’s your example?
JA/Aruna/Alice

79. Goal 1 Level of Attainment Goal 1 : 1 Much less than expected
Level of Attainment
Goal 1 : 1
Much less than expected
(Present Level) 2
Somewhat less than expected
(Progress) 3
Expected level of outcome
(Goal) 4
Somewhat more than expected
(Exceeds Goal) 5
Much more than expected
(Far Exceeds Goal)
JA/Aruna/Alice

80. Summary
The IL specialist should check in with the consumer periodically to help with any problems he or she may encounter in attaining the goal.
If goals achieved are just short of the target, the IL specialist will rate the goal at the lower level of achievement on the GAS scale.
As the goals are achieved, the ILS and the consumer may want to write new goals that feed off the old ones. If this is the case, the process is started all over again.
(Example: after reviewing the exercise log, the ILS and consumer may decide to set new goals on how to talk with the doctor about other ways of handling her depression).
Aruna/Jean Ann/Alice

81. Research
Jean Ann

82. Researching HAIL Start: HAIL Staff Meet with IL Specialist
Choose Eligible Consumers
Pre-Data
HAIL Training
HAIL Steps
Post-Data
Complete Paperwork
Jean Ann
Collected /conducted by IL specialist
Collected /conducted by HAIL staff

83. Research Helps HAIL to Improve
What is the purpose of collecting data?
To know:
whether the HAIL program is effective and feasible to help consumers improve their health.
make improvement based on your feedback
Jean Ann
HAIL staff will collect data using measures. You will complete some of these measures, and help us contact the consumer for the others. Handouts shown in this guide are for your reference. The data collected will be used to help us learn:

84. Where do we go from here? HAIL website is a work in progress
Resources will be uploaded as the program develops
Program will be tested in several CILs and revised
Questions?
Jean Ann

85. Acknowledgements
The contents of this training were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90RT5015). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). These contents do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.
We also wish to thank Drew Rosdahl for constructing our website and Megan Lounds for collecting the resources.