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

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

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

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

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

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

Session 1 Jean Ann

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

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

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

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

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

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

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

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

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 .

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

HAIL Searchable Website www.hail.ku.edu Alice

Navigating the HAIL Website Home Page Alice

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

Navigating the HAIL Website Finding Resources Page Alice

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.

Navigating the HAIL Website Consumer Skills Page ALICE

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

Navigating the HAIL Website Secondary Conditions Page Alice

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

Navigating the HAIL Website FAQ Page Alice

Navigating the HAIL Website Suggestion Box Page Alice

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 email your questions and comments to us. We will get back to you as soon as possible. Alice

Navigating the HAIL Website IL Specialist Toolkit Page Alice

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

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

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

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

Session 2

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

Goal Attainment Scale (GAS) Jean Ann Instructions

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

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.

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

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

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

Aruna

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

Goal Setting https://www.youtube.com/watch?v=1-SvuFIQjK8 Aruna

Practice Aruna

We Do It! Aruna

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.

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

Identify Needs for Consumer skills Aruna

Identify Needs for Finding Resources Aruna

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

Phase 2 Gather Resources Aruna

Website Resources for Consumer Skills Assistive Technology Aruna

Consumer Skill Fact Sheet for Shawntell www.abledata.com Aruna

Website Resources for Secondary Conditions Aruna

Website Resources for Shawntell’s Depression Finding Resources Aruna

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

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

Phase 3 Setting goals Aruna

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

Goal 1 - Consumer Skill Building Assistive Technology Aruna

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

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

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

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

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

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.

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

Shawntell achieves Goal 1

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

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

Let’s Practice Aruna

Goal 2 - Finding Resources for Depression Shawntell exercises Aruna

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

HAIL Exercise Log Aruna

You do it! Aruna/Jean Ann ?Alice

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

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

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

Research Jean Ann

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

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:

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? rtcil@ku.edu 785-864-4095 Jean Ann

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.