A Comparative Study of the United States Korean

A Comparative Study of the United States, Korean and Japan on CIL Services that Improve Community Participation for People with Disabilities: Glen W. White, Craig Ravesloot, Chiaki Gonda, Kyung. Mee Kim Shoji Nakanishi, Ahn Ji Hwan Jeff Gordon and the Consumer Empowered Team

Acknowledgements n Consumer Empowered Team n n n n Jason Beloungy, Independent Living Resources, La Crosse, WI Michael H. Blatchford, ASSIST! to Independence, Tuba City, AZ (deceased) Peggy Cosner and Tom Elmore, Heart of Central Texas ILC, Belton, TX Ann Ford, Illinois Network for Centers for Independent Living, Springfield Rahnee Patrick, Access Living, Chicago, IL Virginia Harris and Julie Harrell, BAIN, Inc. Center for Independent Living, Bainbridge, GA Roger Frischenmeyer, Prairie Independent Living Resource Center (PILR), Hutchinson, KS National Institute on Disability and Rehabilitation Research (grant # H 133 B 060018)

Overview n n n Best practice competition CIL Services Instrument construction CIL Survey translation and testing n CIL Data Collection n Results n Lessons Learned

Best Practices n n Solicited applications NCIL and APRIL members Propose best practices that increase community participation Eight programs selected; 4 each at NCIL & APRIL Conferences Provided content and direction for survey

Instrument Construction n n Best practices Consumer Empowered team 704 report variables International Classification of Function 100 randomly selected CIL websites

Survey Example:

Content Categories Category Number of Items 1. Advocacy 10 2. Housing 6 3. Independent Living Skills 9 4. Information/ Referral 8 5. Peer Support 6 6. Transportation 6 7. Employment 7 8. Recreation 4 9. Assistive technology 4 10. Mental Health 3 11. Healthcare 2 12. Nursing Home Emancipation 2 13. CIL Process Dimension 14

Data Collection (in USA study) n n Randomly selected 90 CILs 65 CILs agree to participate Surveys returned by 61 CILs Completed by 420 CIL staff members

Developing Comparison Process of USA CIL data with Korea and Japan n Initially worked with Chiaki Gonda and Kyung. Mee Kim We contacted and then worked with top IL leaders in Korea and Japan (Ji Hwan Ahn and Shoji Nakanishi) to get their buy-in and agreement to assist with recruiting CILs To maintain consistency, the US survey was translated into Korean and Japanese as close to possible to the original

Developing Comparison Process of USA CIL data with Korea and Japan (con’t) n n n The surveys were then placed into on-line survey format and pilot tested with several consumers in Korea and in Japan Korean and Japanese text and grammar were corrected where necessary and the actual web based survey was de-bugged as necessary Survey went ‘live’ and CIL staff were recruited by Mr. Hwan and Mr. Nakanishi

Developing Comparison Process of USA CIL data with Korea and Japan (con’t) n The international data were collected during late spring-early summer 2012 § USA – 450 CILs – randomly selected 90 – received data 420 staff from 65 CILs n n Korea – 120 CILs – received data from 175 staff from 54 CILs Japan – 121+ CILs – received data from 288 staff from 65 CILs

CIL staff Top 5 items by order of importance USA-Korea-Japan

CIL Staff Top 5 Importance Ratings USA-CILs % 1. Provides services in a way that empowers consumers to make their own choices. 97 2. Advises consumers about benefits they are eligible for (e. g. , Medicaid, SS, housing). 97 3. Provides services in a way that encourages consumers to advocate for their own rights. 97 4. Works for the rights of people with all types of disabilities/chronic health concerns (e. g. , sensory, mental health). 5. Uses partnerships with other agencies in the community to help consumers meet IL needs (e. g. , transportation providers, housing authority). 96 96

CIL Staff Top 5 Importance Ratings Korea-CILs % 1. Provides personal assistant services management training. 97 2. Helps people with disabilities find the types and amounts of personal assistive services they need. 91 3. Provides competent, confidential and respectful peer counseling services. 91 4. Gives services to help integrate consumers into the community once emancipated from nursing home. 5. Provides services in a way that encourages consumers to advocate for their own rights. 91 89

CIL Staff Top 5 Importance Ratings Japan-CILs % 1. Provides services in a way that empowers consumers to make their own choices. 97 2. Gives services to help integrate consumers into the community once emancipated from nursing home. 96 3. Provides nursing home emancipation services. 96 4. Works for the rights of people with all types of disabilities/chronic health concerns (e. g. , sensory, mental health). 96 5. Helps with decision and policy-making regarding other community services for consumers. 95

Content Categories Category Number of Items 1. Advocacy 10 2. Housing 6 3. Independent Living Skills 9 4. Information/ Referral 8 5. Peer Support 6 6. Transportation 6 7. Employment 7 8. Recreation 4 9. Assistive technology 4 10. Mental Health 3 11. Healthcare 2 12. Nursing Home Emancipation 2 13. CIL Process Dimension 14

USA-Korea-Japan Top 10 Importance by Category USA Korea Japan 1. CIL Process Dimension 5 1 2 2. Nursing Home Emancipation 1 2 2 3. Peer Support - 3 2 4. Transportation - - - 5. Housing - - 1 6. Advocacy 2 2 2 7. Employment - - - 8. Mental Health - - - 9. Assistive Technology - - - 10. Independent Living Skills - 11. Information/ Referral 2 1 1 12. Healthcare - - - 13. Recreation - - -

USA-Korea-Japan Top 20 Importance by Category USA Korea Japan 1. CIL Process Dimension 7 6 3 2. Nursing Home Emancipation 2 2 2 3. Peer Support 2 5 4 4. Transportation 1 - 1 5. Housing 1 - 2 6. Advocacy 4 3 6 7. Employment - - - 8. Mental Health - - - 9. Assistive Technology - - - 10. Independent Living Skills 0 2 1 11. Information/ Referral 3 2 1 12. Healthcare - - - 13. Recreation - - -

USA-Korea-Japan Top 10/20 Importance by Category USA Korea Japan 1. CIL Process Dimension 5/7 1/6 2/3 2. Nursing Home Emancipation 1/2 2/2 3. Peer Support 0/2 3/5 2/4 4. Transportation 0/1 - 1/1 5. Housing 0/1 - 0/2 6. Advocacy 2/4 2/3 2/6 7. Employment - - - 8. Mental Health - - - 9. Assistive Technology - - - 10. Independent Living Skills 0 1/2 1/1 2/3 1/2 1/1 12. Healthcare - - - 13. Recreation - - - 11. Information/ Referral

Core Services Comparison US and Japan USA Japan* Info. and Referral Personal Assistance Services Peer Counseling Advocacy ----Info. and Referral IL Skills Training ----IL Skills Training Deinstitutionalization ----Advocacy * Korean CILs were originally developed with Japan’s structure

Comparison of CIL Service Strengths and Weaknesses Strength n Item that has both high importance and high satisfaction Weakness n Item that has high importance, but has low satisfaction

USA Top 5 Strengths n n n Advises consumers about benefits 90% Provides services to empower consumer choice 87% Has services that encourage personal consumer advocacy 86% Makes referrals to other disability support service providers 85% Partners with other community agencies to meet IL needs 85% USA Top 5 Weaknesses n n n Works with worship sites so interested consumers can participate 29% Gives info on accessible medical services 27% Gives education/computer skills workshops 27% Newsletter & website info on accessible community resources 26% Helps increase access to medical services 26%

Korea Top 5 Strengths n n n Provides PAS Management trg. 92% Helps consumers find the PAS they need 91% Gives competent and respectful peer counseling 91% Helps integrate emancipated consumers into the community 91% Provides services to empower consumer choice 89% Korea Top 5 Weaknesses n n n Promotes positive disability portrayal 34% Helps PWD transition to employment and community living 22% Advocates for all PWD rights & Chron/Con 21% Helps PWD have equal opportunity in applying for jobs 20% Offers home access mod. Programs 17%

Japan Top 5 Strengths n n n Provides services to empower consumer choice 97% Helps integrate emancipated consumers into the community 96% Gives nursing home emancipation services 96% Advocates for policies about community services that affect consumers 95% Helps consumers find accessible and affordable housing 95% Japan Top 5 Weaknesses n n n Promotes positive disability portrayal 40% Helps involve PWD in the legislative process 35% Uses grassroots advocacy to increase community accessibility 30% Works with local businesses to increase accessibility 28% Gives regular selfadvocacy training 28%

USA-Korea-Japan Top 10 Strengths by Category USA Korea Japan 5 2 2 2. Nursing Home Emancipation 2 2 3. Peer Support 2 1 - - - 2 2 2 7. Employment - - 8. Mental Health - - 9. Assistive Technology - - 10. Independent Living Skills 1 - 1 1 12. Healthcare - - 13. Recreation - - 1. CIL Process Dimension 4. Transportation 1 5. Housing 6. Advocacy 11. Information/ Referral 1 3

USA-Korea-Japan Top 10 Weaknesses by Category USA Korea Japan 1 - - 2. Nursing Home Emancipation - - 3. Peer Support 1 2 4. Transportation - 2 1. CIL Process Dimension 5. Housing 1 2 - 6. Advocacy 1 3 5 7. Employment 1 2 - 8. Mental Health 1 - - 9. Assistive Technology 1 - - 10. Independent Living Skills 1 1 1 - - 11. Information/ Referral 12. Healthcare 2 1 - 13. Recreation 1 - -

Lessons learned n n All three countries have somewhat similar response patterns US-Korea-Japan all viewed the following content categories as less important compared to other categories: n n n Employment Mental health Assistive technology Health care Recreation

Lessons learned (con’t) § While Korea and Japan have emphasized personal assistive services and peer counseling, they also note value in the process dimensions and how the services are delivered, which reflects core philosophy. . n In the top 20 items of importance Japan and Korea CIL staff agreed on the importance of at least one item in each of the 5 US core service areas.

Lessons learned n n n (con’t) There were no specific item categories for PAS Korea and Japan selected PAS-related items ILS-6 “Provides PAS management training” and I&R-1 “Helps people with disabilities find the types and amounts of PAS they need” Both rated in the top 20. US did select I&R-1 in its top 10.

§ Korea and Japan CILs indicated at least twice the importance of peer support vs US CILs Top USA Impt. 10 0 20 2 Korea Japan 3 5 2 4

Limitations n n The original survey was based on US CIL experience and history with services and may not reflect all the types or descriptions of CIL services offered in Korea and Japan. These findings should be interpreted through a cultural, economic and political lens. The intent of this study is not to determine whether one country offers better CIL services than another, but to examine our commonalities.

Next Steps n n We will be conducting a deeper analyses of these data to determine any other key relationships in the way CIL staff view their services across each of the three countries. This study will be presented and discussed with the leaders of KOIL and JIL to determine further lessons learned.

Next Steps n n n This study will be presented a the Asian Pacific Network on Independent Living in Incheon, Korea this October. We plan on writing reports and papers on this study for US, Korean and Japanese audiences. This study will be presented outside Seoul Korea in late October 2012

Questions and Answers

Contact Information Glen W. White, Ph. D RTC/IL, University of Kansas 1000 Sunnyside Ave. , Room 4089 Lawrence, KS 66045 785 -864 -4095 Glen@ku. edu http: //rtcil. org http: //www. rtcil. org/micl Craig Ravesloot, Ph. D RTC/Rural, University of Montana 52 Corbin Hall Missoula, MT 59812 406 -243 -2992 Craig. Ravesloot@umontana. edu http: //mtdh. ruralinstitute. umt. edu/ http: //rtc. ruralinstitute. umt. edu/health/R u. H. htm