Earlier this year, the Center for Disease Control (CDC) announced an alarming statistic regarding the prevalence of autism spectrum disorder (ASD), stating that is now affects 1 in 68 children (a 30% increase from 1 in 88 two years ago).
The new CDC statistics raise significant concerns about access to care, because autism is a lifelong disorder and the need for services only begins at diagnosis. According to Robert Ring of Autism Speaks, “we need a plan to respond to these numbers, a national strategy for autism, and leadership has to come from Washington, because every congressional district is affected.”
Federal and state government leaders do see the need for new programs to address the public health crisis of ASD, and have responded with urgency. Below are some examples of recent federal and state programs to help those with ASD and developmental disabilities:
- The Achieving a Better Life Experience (ABLE) Act was introduced to allow for the creation of tax-exempt savings accounts for individuals with disabilities. The funds could be used for housing, transportation, job support, medical and dental care, education, community based supports, employment training, and assistive technology — all without jeopardizing eligibility for SSI or Medicaid benefits.
- Coverage for Applied Behavior Analysis (ABA) therapy: In response to a July directive from the federal government to step up Medicaid-funded treatment for autism, a number of states are quickly moving forward to add benefits for behavioral health treatment, including ABA therapy.
- Affordable Care Act (ACA): The ACA gives more Americans access to health coverage and to no-cost preventive services, including autism screening for children at 18 and 24 months. The ACA guarantees coverage even if you or your child has a pre-existing condition, including a diagnosis of ASD, and covers a minimum set of “essential health benefits” – including behavioral health treatment, habilitative services, prescription drugs, and pediatric services.
- Health Insurance Coverage: A total of 37 states, including Virginia ( and the District of Columbia) have laws related to autism and insurance coverage, including requiring insurers to provide coverage for the treatment of autism.
- Section 1915(i) of the Social Security Act allows states to provide a combination of medical services and long-term services and supports. Services can include adult day health services, habilitation (both day and residential), and respite care.
According to the CDC report, one thing that hasn’t changed over the years is that too many children are still being diagnosed later than is optimal. The average age of diagnosis is still over age 4, even though autism can be diagnosed by age 2. The earlier a child is diagnosed with autism, the better their chances of overcoming symptoms associated with ASD. The CDC introduced, “Learn the Signs. Act Early,” to promote developmental and behavioral screening and early intervention. The Department of Health and Human Services (HHS) followed suit with the “Birth to 5: Watch Me Thrive” campaign program to help families look for and celebrate milestones; promote universal screenings; identify delays as early as possible; and improve the support available to help children succeed in school and thrive alongside their peers.
Special Needs Planning
Understandably, for many families dealing with the day-to-day struggles of caring for a child with special needs, the last thing on their minds is planning for the future. However, it is of course vitally important for parents to take the right steps to ensure their child will be financially secure and cared for in the event of death or disability of the parent, including:
- Hiring an attorney who is experienced in creating special needs trusts, such as myself;
- Clearly spelling out your wishes for the disbursement of trust funds within the trust document;
- Finding someone you can trust that has your child’s best interests at heart to serve as trustee and/or
- Hiring an institutional trustee that has a reputation for utilizing social workers and case managers to monitor the welfare of beneficiaries and determine how trust funds should be spent.
Special Needs Trust
A special needs trust is an essential tool to protect a disabled individual’s financial future. Also known as Supplemental Needs Trusts, this type of trust preserves legal eligibility for federal and state benefits by keeping assets out of the disabled person’s name while still allowing those assets to be used to benefit the person with special needs. Read more here.
When it comes to special needs planning, the Fairfax and Fredericksburg Law Firm of Evan H. Farr, P.C. can guide you through this process. If you have a loved one with special needs, call 703-691-1888 in Fairfax or 540-479-1435 in Fredericksburg to make an appointment for a no-cost consultation.
About Evan H Farr, CELA, CAP
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