Residential ModelsCheryl Kilmer, M. A.

CEO & Founder

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?

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

Camp Hill Norway

Camp Hill Scotland

Camp Hill Ireland

Camp Hill South Africa

TERIICF/DD-H

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

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

One Residential Model: Families Joining Together

McNealy House

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

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

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

Lifestyle

Financial OverviewModel Residential Start-Up - 6 Beds

Start Up Revenue:

HUD Grant 550,000

CDBG Grant 250,000

Regional Center 50,000

Parent Contribution 150,000

$ 1,000,000

Start Up Costs:

Home Purchase 500,000

Architecture, Legal, Permits, etc. 150,000

Renovations 300,000

Furniture 20,000

Wages, Security, Other 30,000

$ 1,000,000

Annual OperatingAnnual Operating Revenue:

Medi-Cal, Other 430,000

Sustaining Donations 50,000

$ 480,000

Annual Operating Expenses:

Administration 50,000

Audit, Licensing 10,000

Client Activities 12,000

Food & Supplies 84,000

Transportation 10,000

Utilities & Maintenance 24,000

Wages & Benefits 270,000

Depreciation 20,000

$ 480,000

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

Other Models in Development• Home for 4 young men with HFA and moderate

behavioral needs• Replicates Life Quality supports and standards of first

model

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

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

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)

BarriersLimited 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 agenciesFragmented service system– No organized mutual support – Poor service coordination – Inadequate research on best

practices

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

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)

Vocational Agricultural