Where is my child going to live?

Creating not just a house but a home

Texas Transition Conference 2011

Rosemary Alexander, PhD

What is your ideal home? Safe Comfortable and friendly Convenient Within my budget Provides supports as needed Opportunities for friendship and learning

A house + supports A home is not just a house It's a system of supports A place for relationships, learning, caring,

work, recreation, fun It's integrated into a community

Overall long-term goal:

A home for our children that is Sustainable after parents are gone Provides safety Is the basis for high quality of life

What are the options for a place to live? A continuum:

Institutional settings Group homes Dedicated communities Family/foster family Shared residence

Institutional settings Residents: Large number Staff: large number on shifts Owner: state—a public facility Paid for: by the state Decision makers: the state

Group homes Residents: 4-6 Staff: small number, 24 hour awake staff Owner: private provider Paid for: State through MHMR, Medicaid Decision makers: the state, private

provider

Dedicated communities

Residents: any #, say 10-200 Staff: appropriate ratio, live there Owner: privately owned Paid for: public + private Decision makers: owner, provider,

individuals, community

Family/foster family Residents: family sized, natural mix of

people Staff: family, lives there, helpers in & out Owner: family, owns or rents Paid for: private + public, individual Decision makers: family, individuals

Shared residence Residents: natural mix of 1-3 people Staff: family or just individuals, with

helpers in & out Owner: individuals or family, owns or

rents Paid for: private + public, individual Decision makers: individuals, household

Public owned vs. private owned

PublicLess work for parent, more stable

More behavioral or medical supports

Lower costs

Less choice or control, less individualized

Arbitrary placement, not necessarily based on relationships

PrivateMore work for parent

Higher risk of falling apart

More costly

More individualized, more choice, more control

More natural environment and numbers

Family-like, based on relationships

Examples: group homes ICFMR—Intermediate Care Facility—6 +

residents HCS--provided by the Medicaid Waiver

Program Home and Community–based Services, maximum of 4 residents

Examples: dedicated communities

Down Home Ranch, near Austin (40 residents, 20 with disabilities)

Marbridge Ranch, near Austin (6 cottages of 14 each , a dorm, a nursing home)

New Danville, near Houston (planning stages, many faceted)

Examples: family/foster family HCS Foster family model—HCS Wavier

Program pays a family to care for a person with a disability, either own parent or another family

Shared parenting through CLASS program

Examples: shared residences Lawrence, Kansas, the Turnbull's son

lived in a house purchased through Section 8 Housing, shared with students from nearby university for 20 years

Austin home, purchased by parent, 3 residents, using waivers creatively to provide supports

Parent to Parent Co-op housing

A small group of parents with similar needs for their children, create a living environment where expenses, values, staff are shared

House rented or owned

Responsibilities coordinated and shared by parents

Alternative to a group home

Renting Foundation Communities for low-income

housing in Austin/Dallas-Ft Worth Mary Lee Foundation Section 8 Housing, run by HUD and local

public housing authority, rent subsidy Jointly renting a house or apartment, use

SSI to pay rent

Owning your home HOYO—Home of Your Own Habitat for Humanity Inheriting parent's home Jointly owning a house Section 8 Housing and other programs

may provide assistance to 1st time buyers

Co-housing (cohousing.org) Kaleidoscope Village—Austin, private

homes with shared community, resources Generations of Hope—Illinois, for foster

and adoptive families, retirees Henns of Ohio gained control of an HCS

owned and operated home through a parent advisory board

Intentional community Way to share resources, create social

opportunity, often based on a common belief or purpose

L'Arche—family-like homes where people with and without disabilities share their lives together

L'Arche

...persons with disabilities possess inherent qualities of welcome, wonderment, spirituality, and friendship...L’Arche believes that these qualities, expressed through vulnerability and simplicity, actually make those with a disability our real teachers about what is most important in life: to love and to be loved.

Where to startBe sure your child is set to access the

resources that are available: SSI/Medicaid at age 18: less than $2000

in liquid assets (special needs trust?) Contact local mental health authority Child's name on the Medicaid Waiver

Program waiting lists; if on the list already, know what number

Where to start

Use the school years for your child to learn independent living skills social skills vocational skills academic skills

Where to start

Create a vision for your child's future

Learn about models, local and beyond

Join or start parent groups focused on home issues

Share your vision with your general community