Military Special Needs Families & The Crusade for Continuous Care
How do you make sure your child gets continuous, consistent support,when your family is constantly moving?
Over 100,000 military families have members with special needs, according to the Department of Defense. These include spouses, children, or dependent parents who require special medical or educational services. During the month of July, when America celebrates its Independence, AbilityPath.org introduces you to several military families who have children with special needs and the hard earned wisdom they share with others.
Karen and Colonel Jerome (Jerry) Driscoll were living on Fort Pendleton Marine Corps base in San Diego when their son was diagnosed with autism in 2001. Karen was able to cobble together a comprehensive treatment plan for their boy—combining resources from their local school district, state programs, and the TRICARE military healthcare system. As is the case with military families, Jerry was transferred to Virginia in 2004. “We went from 25 hours of behavioral therapy a week to zero,” Karen said. They found themselves on the bottom of waitlists for special needs programs in their new community, and at odds with school district officials, who said they couldn’t give their son the kind of support he had in California. “It was quite an eye-opening experience,” Karen says. And unfortunately, it’s one that military families frequently face. When you’re moving on average every 2 to 3 years, it can become a constant battle to maintain continuous and consistent care for your child with special needs. Not only must you find new doctors, new therapists, and new schools, but the services and programs vary from state to state and base to base. Plus, each move comes with a new set of bureaucracies and paperwork. The referral process can drag on, so it’s essential to start researching what’s available as soon as you know where you’re going next. “Get smart about your rights, and do everything in your power to speed things along,” says Karen.
The following strategies and tips from military families will help make the journey a little less daunting.
Tips to help with keeping care continuous
Plug into EFMP. Enrollment in the military’s Exceptional Family Member Program (EFMP) is mandatory for all active duty members who have someone in the family with medical or educational disabilities. The EFMP program identifies and documents the special needs, so that the information can be considered when assignments are being made. EFMP also offers additional support through case managers/coordinators (for Army and Marine Corps) and family centers (for Navy and Air Force). They can offer guidance on schools and intervention programs in your new location, and act as a liaison through the transition. Though the level of expertise varies, EFMP reps are often knowledgeable about IEPs, TRICARE policies, and the local Medicaid systems, and can navigate you through the complex maze of services.
Ask for help: Know what your child needs, and get assistance obtaining it. “When we needed a referral for a new doctor, or equipment like orthotics, I’d email our Army EFMP case manager and say, ‘What do we have to do to get this?’” says Caitlin Findlay, an Army wife, whose 16-month-old son has developmental delays caused by a rare chromosomal abnormality. “Keep in mind that these people work from 9 to 5, and may not get right back to you,” she says. “Be diligent about following up. Time is of the essence.” Also reach out to other organizations for aid. When her husband was transferring from Fort Bragg, North Carolina to Virginia, Findlay contacted Zero to Three, a non-profit that supports early intervention services, and inquired about programs in her new community. Associations devoted to specific disabilities can offer a wealth of information too. Another valuable resource is STOMP (Specialized Training of Military Parents), founded and directed by Heather Hebdon, a military spouse and special needs mom. STOMP offers advocacy training and workshops at military installations across the country, and advice through a team of volunteer Parent Education Coordinators who have kids with special needs themselves. STOMP’S Parent Education Coordinators are well-versed in TRICARE benefits, education law, and local resources. They can help you plan for IEP meetings, and might even accompany you to them.
Organize your records. Gather as much documentation as possible from your current providers (medical, therapeutic, and educational) so you have proof of what your child needs. Hand carry everything with you when you move—especially the IEP or 504 Plan, which will be needed to re-qualify for services in the new school. “It’s like starting life over at every duty station,” says Susanna Haynie, mom of a 14-year-old with Down syndrome, and founder of MilitaryDutyStations.com, where parents share what they know about bases they’ve been to. Her family has moved nine times in 15 years. “I always have my current school team write the IEP with the new location in mind, so that her needs and goals are clearly spelled out,” she says. And, “make sure IEP’s are signed,” emphasizes Hebdon, otherwise they won’t be considered valid.
Stand firm. Don’t be afraid to speak up when your child is being denied needed services. “Those in the military have been taught that they shouldn’t question authority,” says Karen Driscoll. “But sometimes, authorities, like school districts, don’t have your child’s best interests in mind. There’s nothing wrong with saying ‘My child needs this treatment, and I’m having a hard time getting it.’” Though children with special needs are entitled to free appropriate public education under the Individuals with Disabilities Education Act, the truth is that families must partner with their school districts and advocate for their child to secure services. Understand your child’s rights, research current policies, and don’t settle for comments like “Give it more time,” or “Let’s wait and see.” And “never take no for an answer,” adds Haynie. If you don’t agree with what health and educational professionals are saying, she suggests responding with phrases like, “I don’t think that’s in my child’s best interest,” or “Help me understand why you can’t provide that.” And when you find an advocate who’s very helpful, show your appreciation. Caitlin Findlay would always stop into her case manager’s office when visiting the hospital, to thank her for all she’s done. She even wrote to her superiors, praising her service. Fostering strong relationships with caseworkers, teachers and therapists will help you build a better team and get more positive results.
Build a personal support system. Military spouses are often shouldering the burdens of advocacy on their own, as their soldiers face overseas assignments or multiple deployments. Give yourself a break when you can. Check with your EFMP to see if your family qualifies for respite care—childcare with skilled, highly trained professionals. “It gives me the chance to run to the supermarket or an IEP meeting, or just relax with the kids,” says Driscoll, who will stay behind with her 3 children while her husband is stationed in Korea for a year, because her son can’t get appropriate services there. “Surround yourself with positive people,” she adds. “I don’t know what I’d do without my best friend, who’s a fellow autism mom and Marine Corps wife. Whether we’re talking by phone or over the Internet, she sustains me. She brings me joy and makes me laugh.” You can connect with other parents through online communities devoted to specific disabilities. Join AbilityPath’s families groups. Family centers on base might be able to connect you to other special needs parents too; check with www.militaryinstallations.dod.mil for additional resources.
Break down the barriers. While the military is working hard to support special needs families through their EFMP program, there are still shortfalls at the legislative level. “The Marine Corps has been doing everything they can to help families with disabilities,” says Driscoll. They even provide special needs trial attorneys to help parents fight non-compliant school districts. But many barriers remain that can only be addressed through policy change. For example, applied behavior analysis (ABA), a therapy proven essential in the treatment of autism, is only available through TRICARE’s Extended Care Health Option (ECHO), which severely limits the amount it will cover, and doesn’t apply to retired service members. Though a bill is in the works to fix this, families are often forced to forgo medically prescribed therapy, or pay for it out of pocket and face financial hardship. “Policy issues like these are spiraling families into crisis mode,” says Driscoll. “And until our legislators address these issues, we will always have these challenges.”
- EFMP: Exceptional Family Member Program
- STOMP: Specialized Training of Military Parents
- National Military Family Association
- Military Homefront The Department of Defense website for official Military Community and Family Policy program information, policy and guidance. Check out the Plan My Move toolkit.
- MilitaryDutyStations.com. Army spouse Susanna Haynie launched this site so military parents can share what they know about bases across the nation.
- Military One Source; 1-800-342-9647 Families who are not located near a military installation are encouraged to call Military OneSource, and ask to talk to a special needs consultant. Designed to supplement programs available on base, Military OneSource can be particularly helpful to National Guard and Reserve families, or those members who are geographically isolated.
- Autism Journey Guide for Military Families (from the Organization for Autism Research)
- ACT Today Grants for Military Families With Autism
- The EFMP’s Special Care Organization Record helps you keep important paperwork in order.