Our mission

1. Advocate for plentiful support services, day programs, employment, and housing for adults with ASD.

2. Educate parents about ASD adult options and provide networking opportunities.

sfautismsociety.org

1

Our purpose tonight

let’s explore the parameters of the possible.

As we work to expand the limited options for adults with ASD...

Some historical perspective....

2

Institutionalization

• In 1968, DCs served approx 13,400 in 8 facilities, + 3,000 on waiting lists. (Today, DC population < 1% total DDS population of 270,000.)

• Runs afoul of today’s philosophy of inclusion; problems with abuse; cost.

Institutions offered certain advantages:• Free rent• No property tax• Onsite staff• Onsite programming and care• Property management• Protected space

3

• Beginning in 1960s, a welcome move to community-based options.

• Group homes, supported living, family home.

• Much money and effort toward closing institutions; but little effort planning for developmentally disabled who were not previously institutionalized.

De-institutionalization

Community-based living offers certain advantages:• Freedom of choice of housing and services• Access to community opportunities• If funded, support staff• If funded, subsidized rent• If funded, day program options

4

And then...

5

0

15,000

30,000

45,000

60,000

1995 1997 1999 2001 2003 2005 2007 2009 2011

Autism Population — Substantial Disability(California Regional Center Caseload)

Source: California Department of Developmental Services

18 years ago... All now adults

68,631 today

6

A baffling influx

A jump in raw numbers of ASD• SARC, GGRC, and RCEB alone, ± 10,000 ASD• In LA County alone, ± 25,000 ASD

A jump in proportion of ASD• ASD: 25.4% of the state RC clients• ASD: 30% of SARC clients

A jump in the younger ages• Under age 22, statewide: 56,391 ASD consumers• Over age 22, statewide: 12,240 ASD consumers

7

What is this “autism”?

• A general term for various neurodevelopmental abnormalities resulting in wildly varying functional deficits and needs.

• But involving certain qualitative differences: social impairment, communication impairment, behaviors. ASD clients tend to be more complex and expensive to serve.

• We use term only for convenience, though it has become so nondescriptive as to be almost useless.

8

What is the status quo?

Under age 22

Federal IDEA requires free and appropriate public education.

Over age 22

No federal mandate to support adults with ASD aside from SSI and Medicaid waiver funding.

• In CA, Lanterman Act helps!, but a substantially unfunded mandate under fire in Sacramento.

9

What our ASD adults need

And people and reliable funding to make it work, forever.

Housing

Staff

Day programs or jobs

(1) Housing in the community, variety of options.

(2) Staff supports to allow for community-based living.

(3) Day programs/facilities and employment, variety of options.

10

But costs exceed reach of most families(and current DDS budget)

• Housing, supports, day program = $160,000 to $225,000/year.

• If living w/ family, program/supports = $40,000 to $100,000/year.

We all will most likely pass on before our kids do.Living at home is always a temporary solution.

11

Our Housing /Lifespan Care Initiative

And fall schedule to be announced soon: sfautismsociety.org

Feb 22: Dream Communities for ASD Adults April 23: Supports for High Functioning ASD Adults

March 19: Protecting ASD Adults from Abuse May 28: Post-Parental Autism Care

12