Support Services for Adults with High-Functioning Autism/Aspergers
Jan Johnston-Tyler
Held at PHP-Sobrato Nonprofit Center, San Jose, on April 23, 2014
Speakers:
• Jan Johnston-Tyler, EvoLibri, which provides comprehensive services to neurodiverse teens and adults, with expertise in Asperger’s
• Elizabeth Kane, director of Shire House, an independent living community for adults with Asperger’s
• Jenn Bulka, Talking Playhouse, which provides social coaching and executive functioning training for all ages
• Meg Fields, Asperger’s Team, which provides camps, social skills classes, and is starting living pods for individuals on the spectrum
• Kaeb Menker, CIP in Berkeley, which provides wrap-around transitional, vocational, and educational services in wrap-around environments.
What do families do when their ASD teens, young adults, or adults may be too ‘high functioning’ to receive services through Regional Centers? Or who receive services but still fall the cracks in terms of employment, housing, and social and life skills? Come hear a panel of Bay Area experts discuss services for the ‘in-between’ teens and adults on the Spectrum, with plenty of time for questions from the audience. Led by Jan Johnston-Tyler, MA, Founder and CEO of EvoLibri Consulting.
Speakers:
• Jan Johnston-Tyler, EvoLibri, which provides comprehensive services to neurodiverse teens and adults, with expertise in Asperger’s
• Elizabeth Kane, director of Shire House, an independent living community for adults with Asperger’s
• Jenn Bulka, Talking Playhouse, which provides social coaching and executive functioning training for all ages
• Meg Fields, Asperger’s Team, which provides camps, social skills classes, and is starting living pods for individuals on the spectrum
• Kaeb Menker, CIP in Berkeley, which provides wrap-around transitional, vocational, and educational services in wrap-around environments.
What do families do when their ASD teens, young adults, or adults may be too ‘high functioning’ to receive services through Regional Centers? Or who receive services but still fall the cracks in terms of employment, housing, and social and life skills? Come hear a panel of Bay Area experts discuss services for the ‘in-between’ teens and adults on the Spectrum, with plenty of time for questions from the audience. Led by Jan Johnston-Tyler, MA, Founder and CEO of EvoLibri Consulting.
Click here for the presentation slides (PDF).
Summary Notes
Please note much of the material was in slides (click on above). Panel was moderated by Jan Johnston-Tyler of EvoLibri
• Elizabeth Kane, Shire House, San Jose. A house for HFA young adults.
Began operations January 2013.
Focus on helping ASD adults get control of their life.
Many come to her mad about having so much of their life out of their control. Wanting independence.
Residents must be in school or holding a job.
Services from as simple as wake up reminders to anger management.
Social mentoring by college students studying psych.
Currently ages 18-28, private pay.
Number of homes, services, etc. will expand as possible and to support the cohort as they age.
Shire House is private non-profit. Like most of others at panel does not take regional center.
• Meg Fields - Asperger's Team, Aspen House
We need a world where ASD people are accepted for who they are. It is even hard for us to fully accept with all the difficulties and limitations. But, it is what is needed in the end.
Lots of ASD people not making it in the ways that are important. Pushed through school but no friends. Main focus of all AspenHouse work is toward social success.
18-day camp in Tahoe is highlight. Done once a year in summer. Bigger every year. In addition to lots of ASD young adults there are lots of volunteers of various ages coming through. Very social environment. ASD adults open up to each other, to Meg, to other visitors
Described using a hammer vs. and incubator to get a chick out of an egg. Too often we use hammers.
Setting up first POD for ASD living community in Orinda opening 8/1. 4-10 people.
• Kaeb Menker, CIP, Berkeley
Kaeb did an exercise that challenged our ability to process information to give audience an idea of autistic experience.
Focus on life skills. Lots of internship and job support focus.
• Jenn Bulka, Talking Playhouse
Suggests ASD adults use "social journal" to record social activities and encourage doing more of them
Suggests Survival Guide Binder with "instructions for life"
Read Norman Dodge and Barbara Arrowsmith
• Jan Johnston-Tyler of Evolibri
5 of their clients just got real, full pay scale jobs at SAP as part of a 7 person group They start a client engagement with a 360 review with client
Focus is on finding educational opportunities of interest to the client and with a "destination" or purpose
Employment focus on pre-employment evaluation and coaching as well as ongoing post
employment coaching. Keeping a job is harder than getting one. Transition from high school is big change for parents and ASD adults. IEP services stop instantly on graduation.
Q & A Session
Most of focus at meeting was on young adults. But many of the providers have and/or plan for older. Some current clients up to age 72.
Department of Rehabilitation is source for $$ toward work support or even college tuition. If you can work but have a disability then eligible.
SSI: Likely to get turned down first few times. A lawyer can help.
Discussion of issue particular to ASD girls given high boy/girl ratio.
Conservatorship usually not appropriate or granted for high functioning ASD. Needs to be at substantial financial or legal risk.
Question on dealing with resistance. ASD adults who don't want to engage, keep learning, etc.
Questions about dealing with lifetime services, parents wondering about organizations that can help foster lifelong supervision, support, coaching peer connections.
Questions about finding other families to collaborate on supported homes. Jill Escher, SFASA president, commented that we need a "Craigslist for Adult Autism Housing and Supports" and that they're hoping to start a pilot to help facilitate networking families with overlapping needs.
Regional Center reimbursements donot cover actual costs. Expect about $3K/month for room/board/support at Shire House. Someone mentioned that is very reasonable and less than $2K very unlikely in any situation.
Closing Words
o Start Early, Don't give up.
o Meg: Both parents and ASD adults need to process grief at each stage. Social engagement is all that matters. Not GPA, degrees, etc.
o Elizabeth: ASD adults want to control their own lives. Shire house goal to enable that.
o Kaeb: We meet the clients "where they are". The sort of parent support/information groups like we did tonight are very helpful.
Please note much of the material was in slides (click on above). Panel was moderated by Jan Johnston-Tyler of EvoLibri
• Elizabeth Kane, Shire House, San Jose. A house for HFA young adults.
Began operations January 2013.
Focus on helping ASD adults get control of their life.
Many come to her mad about having so much of their life out of their control. Wanting independence.
Residents must be in school or holding a job.
Services from as simple as wake up reminders to anger management.
Social mentoring by college students studying psych.
Currently ages 18-28, private pay.
Number of homes, services, etc. will expand as possible and to support the cohort as they age.
Shire House is private non-profit. Like most of others at panel does not take regional center.
• Meg Fields - Asperger's Team, Aspen House
We need a world where ASD people are accepted for who they are. It is even hard for us to fully accept with all the difficulties and limitations. But, it is what is needed in the end.
Lots of ASD people not making it in the ways that are important. Pushed through school but no friends. Main focus of all AspenHouse work is toward social success.
18-day camp in Tahoe is highlight. Done once a year in summer. Bigger every year. In addition to lots of ASD young adults there are lots of volunteers of various ages coming through. Very social environment. ASD adults open up to each other, to Meg, to other visitors
Described using a hammer vs. and incubator to get a chick out of an egg. Too often we use hammers.
Setting up first POD for ASD living community in Orinda opening 8/1. 4-10 people.
• Kaeb Menker, CIP, Berkeley
Kaeb did an exercise that challenged our ability to process information to give audience an idea of autistic experience.
Focus on life skills. Lots of internship and job support focus.
• Jenn Bulka, Talking Playhouse
Suggests ASD adults use "social journal" to record social activities and encourage doing more of them
Suggests Survival Guide Binder with "instructions for life"
Read Norman Dodge and Barbara Arrowsmith
• Jan Johnston-Tyler of Evolibri
5 of their clients just got real, full pay scale jobs at SAP as part of a 7 person group They start a client engagement with a 360 review with client
Focus is on finding educational opportunities of interest to the client and with a "destination" or purpose
Employment focus on pre-employment evaluation and coaching as well as ongoing post
employment coaching. Keeping a job is harder than getting one. Transition from high school is big change for parents and ASD adults. IEP services stop instantly on graduation.
Q & A Session
Most of focus at meeting was on young adults. But many of the providers have and/or plan for older. Some current clients up to age 72.
Department of Rehabilitation is source for $$ toward work support or even college tuition. If you can work but have a disability then eligible.
SSI: Likely to get turned down first few times. A lawyer can help.
Discussion of issue particular to ASD girls given high boy/girl ratio.
Conservatorship usually not appropriate or granted for high functioning ASD. Needs to be at substantial financial or legal risk.
Question on dealing with resistance. ASD adults who don't want to engage, keep learning, etc.
Questions about dealing with lifetime services, parents wondering about organizations that can help foster lifelong supervision, support, coaching peer connections.
Questions about finding other families to collaborate on supported homes. Jill Escher, SFASA president, commented that we need a "Craigslist for Adult Autism Housing and Supports" and that they're hoping to start a pilot to help facilitate networking families with overlapping needs.
Regional Center reimbursements donot cover actual costs. Expect about $3K/month for room/board/support at Shire House. Someone mentioned that is very reasonable and less than $2K very unlikely in any situation.
Closing Words
o Start Early, Don't give up.
o Meg: Both parents and ASD adults need to process grief at each stage. Social engagement is all that matters. Not GPA, degrees, etc.
o Elizabeth: ASD adults want to control their own lives. Shire house goal to enable that.
o Kaeb: We meet the clients "where they are". The sort of parent support/information groups like we did tonight are very helpful.