Earlier this month democratic presidential candidate, Hillary Rodham Clinton, released her plans for a comprehensive autism initiative under her administration. Today I’m going to review her plan and provide my thoughts about it.
Because its political season, I want to clear up a few things so that this blog can be read with a clear head and a clear heart:
- This is not a political blog. My thoughts and comments are solely related to my opinion of the merits of Hillary’s plan. I am a registered Democrat, but I am not necessarily a Hillary supporter; and
- I am not a single issue voter, but I do believe that some issues are more important than others. As a parent of a child with autism, this is a very important issue to me.
So let’s get started. Hillary’s plan has 7 components: Early screening and detection, Insurance coverage, Safety, Support for Transition into adulthood, Caregiving, Research, and Enforcement. I will briefly describe each below:
Early Screening and Detection
Clinton is proposing that CMS encourage physicians to conduct autism screenings at 18 and 24 months, and that the coverage for autism screenings be included in payment for the Early Periodic Screening and Diagnosis Treatment (EPSDT) as well as covered under marketplace plans under the ACA.
This portion of her plan focuses on closing the gap for insurance coverage for autism related services by encouraging states that still lack legislation for mandatory coverage under commercial insurance to create and pass that legislation and ensure that those states who administer an ACA marketplace include autism related services in their coverage. Her plan also calls for the creation of state Medicaid coverage through a “report card” system.
Transition Plan for Young Adults
This proposal requires high schools to create and implement plans for students transitioning into adulthood and focuses on employment, post-secondary education, and housing. Hillary is proposing the “Autism Works” initiative that will be a partnership with employers to provide opportunities for our young adults so that they can live as independently as possible and support themselves.
This part of the her plan encourages awareness and utilization of existing laws under the ABLE Act of 2014 See ABLE summary here. Similar to 529 education plans, ABLE accounts permit caregivers to set aside money for health, support services, and other expenses a disabled beneficiary need resources for without generally having to worry about spend-down requirements associated with SSI, Medicaid, or other governmental program eligibility considerations. This is not an autism specific initiative, but does benefit persons with autism.
Hillary’s plan includes increased funding for all biomedical research. This is not an autism specific proposal, but it will have the net effect of increasing funding for autism research.
This portion of the proposal commits, where federal and state laws are applicable, enforcement to make sure that schools, providers, and states are complying with their legal responsibilities and utilizing government funding the way its supposed to for the benefit of disabled persons. Again this is not an autism specific proposal, but the net effect will be enforcement of laws that affect persons with autism. Examples would include ensuring schools meet their obligations under the IDEA, all publicly funded entities providing reasonable accommodations for persons with disabilities, and the distribution of assisted technology funded by federal funds.
So what do I think about this plan?
Early detection is the key to giving a child with an ASD a chance to be the best that they can be, wherever they are on the spectrum. While any plan to promote early screening and detection is better than no plan, the best way to promote early detection is to tie it to reimbursement. Not only should autism screening be “covered”, there should be a requirement to perform it as part of the EPSDT visit and a mandate for commercial insurers who cover well child care visits. Tying the mandate to physician reimbursement is a sure fire way that autism screening at the primary care level becomes the standard of care in pediatric medicine. Additionally, it is a cost-neutral way to promote early screening and detection.
Over 40 states already have laws governing coverage for autism services, and those that do not provide coverage through Medicaid. It is not good enough to only have coverage, families want meaningful coverage, meaning no caps and limits placed on autism services benefits. Autism is not a “one size fits all” condition, nor does it go away after a certain number of visits, so the coverage should be commensurate to the need.
Support for placing resources in an ABLE account is great, but not everyone has disposable income to fund those accounts, so like all other financial products and resources, that only benefits those who can afford it.
We all worry about what happens if we are not around to our children when they become adults. Where they will live? How do we leave them resources to use without the government requiring them to spend-down? What if I don’t have any money to save? Sometimes we don’t need new laws, we need to enforce the ones we have, so it is at least refreshing to see that Secretary Clinton has a plan for compliance and enforcement for those laws already on the books. Much of the frustration that families have is due to the lack of compliance and bureaucracy associated with obtaining the rights that they already have.
And while we live in the here and now, and increase in research funding enables the scientific and medical community to continue its quest to research treatments and needs, including those of autistic adults.
There really isn’t anything novel about Hillary’s plan, but it is an acknowledgement of the needs of children and families affected by ASD, which no other presidential candidate has offered thus far. Early intervention is key, so any effort to tie early intervention to reimbursement would definitely give families a head start in seeking treatment, and transition planning as our children become adults is vital to them having as much independence as possible, and giving us some comfort that our children will be cared for. Finally, enforcement of existing legislation that benefits ASD families would help to mitigate the frustrations associated with benefits, programming and services. I give Mrs. Clinton an “A” for effort.
Until next time….