WASHINGTON, DC (May 16, 2013) -- In its fourth annual survey of military families, Blue Star Families found widespread dissatisfaction among special needs parents in the military with medical, educational and housing services, including access to ABA. Of the 5,125 military families who responded, 19 percent said they were receiving special needs services through the military; of those, 36 percent cited autism as their child's disability.
A national, non-profit network of military families from all ranks and services, including guard and reserves, Blue Star Families conducted the online survey in November 2012 and obtained 5,125 responses from service members stationed domestically and abroad. The survey found that 31 percent of the special needs parents enrolled in the military's Exceptional Family Member Program (EFMP) felt their participation had harmed their military careers.
"Navigating the military healthcare system to obtain services can be challenging for caregivers for Exceptional Family Members (EFM)," the report said. "The National Council on Disability noted that it is even harder for young parents, those with more than one exceptional family member, those who themselves are exceptional family members, and those with a deployed service member."
Fewer than half of the families responding to the survey said they felt supported by their chain of command, the EFMP at their base or the surrounding civilian population. In addition, shortcomings were found with TRICARE, the Department of Defense health insurance program for active duty and retired personnel.
"Families may also struggle when trying to obtain recommended specialty services that are not covered by TRICARE, such as applied behavior analysis (ABA) therapy for children with autism," the report found. ABA has been restricted to active duty members by TRICARE and a one-year pilot program ordered by Congress last year for all service members has been delayed indefinitely due to budget issues. In addition, TRICARE has been sued in a federal class action suit for restricting access to ABA.
The survey also addressed the financial impact of paying out-of-pocket for services not covered under TRICARE by quoting two Navy spouses.
“He probably would’ve stayed in (active duty) if he felt that we would not have to spend so much money out of pocket obtaining speech, occupational, and physical therapy for our son,” said one. The other Navy spouse said, "Moving duty stations requires military families to re-enroll in EFMP program services. This means that children may be waiting for months, often times a year, to access services.”
Access to state Medicaid waivers also arose in the Blue Star report, which noted that every time a military family redeploys to another state they drop to the bottom of the new state's waiver list.
"Sixty-four percent of respondents reported diﬃculty accessing community/state-based supports, such as Medicaid waiver beneﬁts," the report found. "In addition, 55 percent of respondents with an EFM also reported diﬃculty ﬁnding adequate housing when relocating."
Special needs parents overall said they were satisfied with their child's educational services, until they are required to enroll into another school district as a result of redeployment. Two thirds of the respondents said educational accommodations were "challenging" following relocation.
"New school districts will honor the previous individualized education program (IEP), but the district has authority to decide how the goals and objectives will be met and it may not be through the same exact program or services," the report said.
Blue Star Families in the report urges better supports for special needs families when they relocate, including the ability to maintain Medicaid waiver services when they move to another state. Autism Speaks is supporting efforts to make TRICARE coverage of ABA for all military members permanent and at the levels prescribed by medical professionals.