Tuesday, June 5, 2012

How the DSM-5 Draft Autism Criteria Will Affect Law, Policy and Service Provision

The Autistic Self-Advocacy Network's Ari Ne'eman and Steven Kapp have released a policy brief: What Are the Stakes? An Analysis of the Impact of the DSM-5 Draft Autism Criteria on Law, Policy and Service Provision [PDF].

The full PDF brief can be found at bit.ly/DSM-5, and "...summarizes the legal and policy details of the program under discussion and attempts to identify the likely implications of the DSM-5’s outlined changes in the criteria for Autism Spectrum Disorder on eligibility, benefits, and access to services and legal rights."

The legal and policy areas in question are described, then followed by analyses of the proposed DSM-5 changes' implications:

  • Individuals with Disabilities Education Act (eligibility criteria)
  • Impact of DSM-5 Shifts on Students with Disabilities Receiving Services Under IDEA
  • ADA/504 Accommodations (guaranteeing non-discrimination re: disability in schools and in the workplace)
  • Impact of DSM-5 Shifts on ADA/504 Protections
  • Medicaid-Funded Developmental Disability Services
  • Impact of the DSM-5 on Individuals Receiving Medicaid-financed I/DD [Intellectually /Developmentally Disabled] Services
  • Supplemental Security Income and Social Security Disability Insurance (income support)
  • Impact of DSM-5 Shifts on SSI/SSDI Applicants and Medicaid Buy In Program Participants
Ne'eman and Kapp outline why you should be concerned [emphases below added -SR]:
Our analysis suggests that DSM-5’s proposed shifts to the definition of the autism spectrum will have both positive and negative implications for children and adults seeking to access services, supports and accommodations. 
With respect to IDEA-mandated special education and related services, ID/DD service provision financed through the Medicaid HCBS waiver program, and possibly the income support and public health insurance offered through the SSI and SSDI programs, the DSM-5’s proposed unification of the major ASD diagnoses into a single diagnosis has the potential to improve access to services. 
The shift of individuals off the autism spectrum into other non-ASD diagnoses, such as the new Social Communication Disorder, or to no diagnosis at all, will likely diminish access to IDEA-mandated services, ADA/504 legal protections, the SSI and SSDI programs and their associated public health insurance, and Medicaid Home and Community Based Services waiver services. These concerns are serious and would have practical consequences to children and adults on the autism spectrum, their families and the professionals who serve them. 
At the same time, it is our belief that the potential problems we have outlined above are by no means inevitable and can be addressed through changes that nonetheless retain the basic structure proposed for the DSM-5. 
We hope readers will submit constructive comments to the DSM-5 working group. Instructions for doing so can be found at AutisticAdvocacy.org's ASAN Talking Points on DSM-5. Comments will be accepted through June 15, 2012. 

Ne'eman and Kapp also noted the following, so stay tuned to AutisticAdvocacy.org for more autism-specific DSM-5 information, recommendations, and action items:
This brief is the first of two focusing on the DSM-5. Our second brief will outline ASAN’s recommendations regarding the draft criteria and proposed severity scale.