residential models cheryl kilmer, m. a. ceo & founder
TRANSCRIPT
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
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
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
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)