1. Residential Models Cheryl Kilmer, M. A. CEO & Founder

2. Current Structure of System Institutions/Developmental Centers Intermediate Care Facilities –ICF/DD-H –ICF/DD-N Community Residences/ Group Homes Intentional Communities – L’Arche; Camp Hill Family Home Agency Supported Living Individualized Funding –Independent Living There are a range of options…So what’s the PROBLEM?

3. The Reality is……. The issue isn’t the “type” of facility The issue IS …. –Having a range and adequate number of residential choices that meet individual needs –Having environments that are specifically designed for the residents –Having people who are trained and who also care deeply –Having leadership that is committed to quality –Respect for individuals and families –Adequate funding: start-up and ongoing

4. Camp Hill Norway Camp Hill Scotland

5. Camp Hill Ireland Camp Hill South Africa

6. TERI ICF/DD-H

7. There is no RIGHT way… Almost any type of community residence can be “right” if it meets the dreams and goals of individuals and their families

8. What Parents and Individuals Want Safety and health Respect and dignity Access to community Active social and recreational lifestyle Accountability Entitlement Choice Staff trained in autism Life in home community Family involvement and support Community acceptance Research based best-practice Adequate funding In other words…………… Quality Of Life

9. One Residential Model: Families Joining Together McNealy House

10. Quality Standards Quiet and safe neighborhood near families 4000 square foot home Four individual bedrooms Pool, jacuzzi, barbecue, outdoor recreation and eating space Private areas-2 living rooms plus game room High quality materials and furnishings Close to community recreation and shopping

11. TERI Program Model Group of 4 parents approached the agency Agency facilitated Life Quality Planning Families given options on types of residential supports Families chose to involve an additional 2 families to reduce costs and increase staff Agency and families designed the model

15. Staffing Live-in staffing pattern; 1:2 ratio during week Awake night time staff Experienced staff only Stable, dedicated staff, trained in autism Competitive benefits and salary –Staff salaries: $14-18/hour (30%+ above norm) plus medical, dental, 3 weeks PTO Parents support weekend relief

16. Lifestyle

17. Financial Overview Model Residential Start-Up - 6 Beds Start Up Revenue: HUD Grant550,000 CDBG Grant250,000 Regional Center50,000 Parent Contribution150,000 $ 1,000,000 Start Up Costs: Home Purchase500,000 Architecture, Legal, Permits, etc.150,000 Renovations300,000 Furniture20,000 Wages, Security, Other30,000 $ 1,000,000

18. Annual Operating Annual Operating Revenue: Medi-Cal, Other430,000 Sustaining Donations50,000 $ 480,000 Annual Operating Expenses: Administration50,000 Audit, Licensing10,000 Client Activities12,000 Food & Supplies84,000 Transportation10,000 Utilities & Maintenance24,000 Wages & Benefits270,000 Depreciation20,000 $ 480,000

19. Outcomes of Model Resident choice and activities have reduced dangerous behavior by average of 50% Families have formed circles of support for each other—long term commitment Siblings have increased level of involvement Family life quality rating= Superior Resident life quality rating= Superior Long-term dedicated staff Families have partnered with the agency for long term support—endowment funds

20. Other Models in Development Home for 4 young men with HFA and moderate behavioral needs Replicates Life Quality supports and standards of first model

21. Retirement Home Lifespan supports Accommodate decline in health and mobility Increased nursing supports Individual rooms for all residents Allows friendships to be maintained Family options and peace of mind 24 hour staffing in hospital/ rehab. facilities Agency nursing support to hospitals

22. A Quality Life Community activities each weekend Karate lessons weekly Regular events to include families (dinners, parties, holidays) Vacations Therapeutic Equestrian Program Music Therapy; Companion dog program Chiropractor/Massage weekly Personal fitness trainer-daily fitness program Sensory based activities daily Active involvement in cooking, gardening, home maint. Swimming/Jacuzzi daily, if desired Weekly e-mail updates to families and relatives Community volunteerism: replanting burn areas; Helping neighbors Sibling specific activities planned by house Friendship development and maintenance Medical support

23. Life Quality Planning Must form the basis of all residential supports and services Life quality planning details individual and family needs and dreams Special Needs Life Coaching Research shows families need support to envision and design a quality adult life (especially for those with significant needs)

24. Barriers Limited Options –Lack of programs/individualization –Waiting Lists –No mandated right to services Competition for scarce resources –Inadequate reimbursements –System as a barrier –Mistrust of service system Devaluation/Low status –Low socioeconomic status –Limited rural services –Cultural and language differences Discrimination and inaccessibility –Not In My Back Yard –Homes not designed for persons with autism –Little autism-specific training in universities and agencies Fragmented service system –No organized mutual support –Poor service coordination –Inadequate research on best practices

25. Suggested Action Steps: Institute long term life quality planning for FAMILIES as well as individuals Provide lifespan coaching for families Increase funding sources for start-up Increase daily reimbursement rates (improves choice; staff salaries and quality; individualization Provide for tax deductible savings for residential/lifespan supports Unite Autism Groups Design a nationwide, autism based residential staff training program

26. Suggested Action Steps Provide training on adult services and autism in universities Mandate the right to residential and lifespan supports Increase funding for more research on “best practice” residential models for persons with autism Improve community awareness of autism and centralize information on life quality research and models that “work”: IALQ (International Association for Life Quality)

30. Vocational Agricultural