Crowdsourcing at its most relevant, this is about the outcomes of the innovative community discussion held for the autism community via Twitter on December 23rd 2008 in support of the initiatives of the Obama-Biden Transition Team under the oversight of Tom Daschle. Links listed at the bottom are from the slides.
Part One includes introductions, challenges, wishes, and the importance of location in receiving care in the USA.
Part Two includes discussions on service, insurance, and education.
Part Three includes research, resources discussed in the event, and suggestions for governmental involvement or oversight.
Where It Started
This was a provocative topic to many of the people involved in the event, as that awareness of the possibility of assistance for provision of in-home services was minimal, and awareness that parents could be paid for providing in-home care to their disabled child in place of out of home employment was entirely new to most. The parent who was doing this, Bonnie Sayers, provided extensive information and resources about it. Further digging revealed that this is possible in only a few states in the country: California, Massachusetts, North Carolina, Pennsylvania and Wisconsin (State-Based Initiatives to Improve the Recruitment and Retention of the Paraprofessional Long-Term Care Workforce).
California: Department of Developmental Services: Information About Regional Centers: http://www.dds.cahwnet.gov/RC/Home.cfm
California: Department of Social Services: In-Home Supportive Services: http://www.dss.cahwnet.gov/cdssweb/PG139.htm
State-Based Initiatives to Improve the Recruitment and Retention of the Paraprofessional Long-Term Care Workforce (Institute for the Future of Aging Services, Paraprofessional Healthcare Institute): http://aspe.hhs.gov/daltcp/reports/pltcwf.htm
US. DHHS. In-Home Supportive Services for the Elderly and Disabled: A Comparison of Client-Directed and Professional Management Models of Service Delivery (Doty et al): http://aspe.hhs.gov/daltcp/reports/ihss.htm
United Domestic Workers of America: Statewide Information on IHSS Wages, Contracts and Unions: http://www.udwa.org/statewid.htm
California Disability Community Action Network: IN-HOME SUPPORTIVE SERVICES (IHSS) ISSUES: http://www.cdcan.us/IHSS/index.htm
Protection & Advocacy, Inc: IHSS FAIR HEARING AND SELF-ASSESSMENT PACKET: http://www.pai-ca.org/pubs/501301.htm
Protection & Advocacy, Inc: IHSS ISSUES – PROTECTIVE SUPERVISION (Revised January 2000): http://www.pai-ca.org/pubs/527601.htm
Disability Rights, California: In-Home Supportive Services, Nuts & Bolts: http://disabilityrightsca.org/pubs/547001Index.htm
Discussion about research made it clear that there is substantial lack of agreement about the causes and best practices for treatment for autism spectrum disorders. In addition, what information or medical consensus is available is largely unclear to the ASD community, especially parents making decisions for their children. The links below include information about proven, contested, unreliable, and emerging approaches that were discussed or mentioned during the event. There is no implied endorsement of any of the resources listed. There was a call from the ASD community at this event for coordination of research findings and dissemination of results in a coherent fashion to stakeholders.
Australian Government: Department of Health and Ageing: A review of the research to identify the most effective models of practice in early intervention for children with autism spectrum disorders: http://www.health.gov.au/internet/main/publishing.nsf/Content/mental-child-autrev-toc~mental-child-autrev-comp~mental-child-autrev-comp-che
Healing Threshholds: Autism: Novel Treatments for Autistic Spectrum Disorders: http://autism.healingthresholds.com/research/novel-treatments-for-autistic-sp
Chew, Kristina. Another Autism “Treatment”: Stem Cell Therapy. Autism Vox. July 12, 2007. http://www.autismvox.com/another-autism-treatment-stem-cell-therapy/
STEM CELLS: THE FINAL PIECE OF THE AUTISM PUZZLE? Age of Autism. July 11, 2008. http://www.ageofautism.com/2008/07/stem-cells-the.html
Stem Cells for Brain Injury Recovery? Age of Autism. January 2, 2009. http://www.ageofautism.com/2009/01/stem-cells-for-brain-injury-recovery.html
Ichim et al. Stem Cell Therapy for Autism. Journal of Translational Medicine 2007, 5:30. http://www.translational-medicine.com/content/5/1/30
2007 Fall Rimas Autism Dolphin Therpay (sic): http://www.youtube.com/watch?v=CMpunLzaccE
Hyson, Michael T. Dolphins, Therapy and Autism. Planet Puna, Sirius Institute: http://www.planetpuna.com/dolphin-paper-html/dolphin-paper.htm
Research Autism: Dolphin Therapy: Basic Level: http://www.researchautism.net/interventionitem.ikml?ra=64
Research Autism: Dolphin Therapy, Advanced Level: http://www.researchautism.net/interventionitem.ikml?ra=64&infolevel=4&info=researchstudiesincluded
Research Autism: http://www.researchautism.net/
Research Autism: Alphabetic List of Interventions: http://www.researchautism.net/alphabeticalInterventionList.ikml
Other Resources Shared
One of the blessings of the two Autism Twitter Day events has been the intense sharing of information and resources among the community members. While the resources were shared by autism spectrum disorder (ASD) community members for each other, the ones listed below were mentioned during the event for the Obama-Biden Transition Team, and may potentially be useful for decisionmakers seeking to better understand the needs of the ASD community.
Autism Hangout: Podcasts: Adonya Wong – “Key Learnings of Autism Thought Leaders”: http://www.autismhangout.com/news-reports/feature-programs.asp?id2=80
Age of Autism: http://www.ageofautism.com/
Toast on the Ceiling: Where Was This Book When I Needed It?: http://toastontheceiling.blogspot.com/2008/12/where-was-this-book-when-i-needed-it.html
Sensory Processing Disorder Answer Book: http://www.amazon.com/Sensory-Processing-Disorder-Answer-Book/dp/1402211236/
Health Products for You: Posey Bed Canopy System: http://www.healthproductsforyou.com/catalog/products/4286/Posey-Bed-Canopy-System/
Causecast: Autism Health Twitter day Tuesday December 23rd ALL DAY Obama wants to know: http://www.causecast.org/member/tanners-dad/videos/4994-autism-health-twitter-day-tuesday-december-23rd-all-day-obama-wants-to-know
Easter Seals: Guide to Living with Autism [PDF]: http://www.easterseals.com/site/DocServer/Study_FINAL_Harris_12.4.08_Compressed.pdf?docID=83143
Act for Autism: http://actforautism.org/
Helen DeVos Children’s Hospital: http://www.devoschildrens.org/?start
BellaOnline: Autism Spectrum Disorders Site: Purposeful Communication Techniques: http://www.bellaonline.com/articles/art59220.asp
Voice of America: Temple Grandin Turned Disability Into Asset for Animals: http://www.voanews.com/english/AmericanLife/2008-12-22-voa35.cfm
Temple Grandin: http://www.templegrandin.com/
Autism Speaks: Support Groups: Michigan: http://www.autismspeaks.org/community/fsdb/category.php?sid=27&cid=76
Wrong Planet: Could autistics become the majority in the distant future?: http://www.wrongplanet.net/postt86414.html
Wrong Planet: http://www.wrongplanet.net/
BellaOnline: Autism Spectrum Disorders Site: Book Review on puberty and hygiene for young people with autism: http://www.bellaonline.com/articles/art34042.asp
US Department of Education: Office of Civil Rights: http://ed.gov/ocr/ OR http://www.ed.gov/about/offices/list/ocr/index.html
Autism Risk & Safety Management: http://www.autismriskmanagement.com/
American Speech-Language-Hearing Association: Typical Speech and Language Development: http://www.asha.org/public/speech/development/
Autism Speaks: Interagency Autism Coordinating Committee (IACC) nears completion of Strategic Plan for Autism Research: http://www.autismspeaks.org/inthenews/dec_12_2008_iacc_meeting_recap.php
CauseCast: Tanner’s Dad: http://www.causecast.org/member/tanners-dad