Congressional Briefing: Overcoming Barriers Faced by Military Children With Special Needs

February 21, 2010

Congressional Briefing: Overcoming Barriers Faced by Military Children With Special Needs

Congressional Military Family CaucusMilitary families with children often face educational disruptions.  But what happens when military families with special needs children move?  The evaluation process for services varies wildly from state to state and is time consuming.  The level of services also varies across the country.  These challenges can be frustrating to military families with special needs children.  Today, we welcome guest author Jessica Butler, mother of a child with autism, attorney and advocate for special needs children, to address these issues.
 
by Jessica Butler

Earlier this month, I attended a briefing hosted by Congresswoman Cathy McMorris Rodgers (R-WA) focusing on the barriers faced by military parents of children with disabilities, including in special education.  McMorris Rodgers serves on both the House Committees on Armed Services and Education, and is Co-Chair of the Congressional Down Syndrome Caucus and Vice Chair of the Republican Conference.

 
Congresswoman Susan Davis (D-CA, and Chair of the Military Personnel Subcommittee) joined McMorris Rodgers in emphasizing the importance of disability issues.  There are 100,000 military families with children or other family members who have a disability.  When retirees are added, the numbers swell to 220,000.
 
The room was packed; it was a standing-room only crowd, including aides from many Congressional offices. (Aides are often central players in public policy, helping members of Congress develop their views, write their positions, and advance bills.  They are not simply assistants, and their presence at a briefing like this is important.) 
 
The Marine Corps Advocacy Experience
 
Mrs. Annette Conway, wife of Marine Corps Commandant James Conway, and a special education teacher spoke of the Marine Corps' outstanding program.  The Marines medical care, respite care, and advocates help with special education and disability issues.  The Marine Corps currently has 3 attorneys on staff.
 
Parents must navigate a new maze each time they move. At Camp Pendleton, for example, two different school districts served children, and each offered different special education services.
 
The Marine Corps hired 24 school liaison officers and 25 case managers to help families figure out new schools, special ed programs, therapies, and medical providers.  The sheer number of support staff hired illustrates the serious issues for all children with disabilities--military and civilian--when they must move.
 
Mrs. Conway explained, "Quality of life is a readiness issue," and it requires making dramatic changes, including hiring case managers, advocates, and attorneys to help parents get what their children need.
 
New Military Special Needs Office
 
Other branches of the military do not yet provide the same services the Marines do. As a result, in 2009, Congress created the Office of Community Support for Military Families With Special Needs, in the Office of the Undersecretary of Defense for Personnel.  The Office will advocate for families in the military to help resolve these issues.
 
Representatives of the Office  recently met with 10 families to hear their concerns.  Parents in the briefing audience urged the Office to conduct a national survey of needs to better understand the problems faced by all families.
 
Reference was made to the internet services available to the military for figuring out special education.  One advocate pointed out that "The 1950s model no longer works.  You don't get a soldier and his wife."  Many parents are juggling multiple responsibilities and a website often is not enough to help them understand local special education policies, services, and laws.
 
Problems are particularly significant for military family members who are low-income or less-educated as may happen with some enlisted personnel.  Referring these parents to websites simply is often not enough and they need more 1:1 support, said one advocate. (According to reports in 2009, military families redeemed food stamps at twice the rate of civilian families; low income parents often face significant barriers in advocating for children in special education.)
 
Three Military Dads: Transporting an IEP and Services Across State Lines
There’s no Stay-Put!
 
Three military dads spoke about their experiences, Jeremy Hilton (U.S. Air Force spouse), Charlie House (Gunnery Sergeant, U.S. Marine Corps), and Scott Campbell (Lt. Colonel, U.S. Army).
 
Jeremy is a former Navy submariner who gave up his career to care for his daughter, Kate, who has hydrocephalus and associated issues.  Jeremy's wife, Renae, is in the Air Force.  Kate is seven; her family has moved 5 times in the last five years with deployments and assignments.
 
When the Hiltons moved from Texas to Alabama, Kate came with a preschool IEP (Individualized Education Program) and services.  But the Alabama school district took the Texas evaluation and cut Kate's services in half.
 
The district dared the Hiltons to take them to due process (suing for services), knowing that few families in a 10-month program like Renee's could do so.  If Kate was to get services at all during that time, the Hiltons had to accept the IEP.  There is no stay-put when children move across state lines.
 
Going to due process would have been tough for the Hilton family. School districts have law firms on retainer and budgets to pay for expert witnesses. But parents of children with disabilities must pay for expert witnesses out of their own pocket.  (Congresswoman McMorris Rodgers is a cosponsor of HR 2740, the IDEA Fairness Restoration Act, which would allow parents to recover their expert witness fees.)
 
Another parent sent in a written description of the issues she faced.  She and her navy husband spent $80,000 of their retirement savings litigating against the school district on the base where their family resides.
 
"It is very tough for all kids to move, but for our kids with special needs, it is much harder to ensure that they get a good education,"  Jeremy explained.
 
Foster Children, Homeless Children Face Similar Issues; Problem is IDEA 2004 Language
 
Children in foster care, homeless children, and others who move frequently face these same issues.  With IDEA reauthorization years away, having members of Congress shine a light on these issues is good.
 
Under IDEA (Individuals with Disabilities Education Act) of 2004, the new District must provide FAPE and “comparable services” until an evaluation performed and new IEP created.  20 U.S.C. 1414 (d)(2)(C)(ii) (Free Appropriate Education, or "FAPE," is an educational right of children with disabilities under the Rehabilitation Act of 1973).  Many districts interpret this broadly, allowing them to provide inferior services to the child who has moved and to ignore the prior IEP.  This rule applies to both interstate and intrastate moves.  Previously IEPs were honored for intrastate moves.
 
IDEA 2004 also does not adequately address issues when children move mid-evaluation, in my opinion. The new district should coordinate with the old one, but the deadlines for finishing the evaluation starts all over again once parents move. (The original Senate language would have required the new district to finish the evaluation process under the old district's timelines, but this changed in the final bill.)  20 U.S.C. 1414(b)(3).
 
Other Problems When Families of Kids with Special Needs Move Frequently
 
Charlie House, Gunnery Sergeant, U.S. Marines, father of three spoke of his son Haiden, a 2 year old with Down Syndrome.  Haiden and his mom could not come; he had 6 medical appointments that day.
 
Living on the base in Quantico, nearly an hour south of Washington, D.C., Haiden's parents scramble to put together the pieces he need: medical, education, therapy, and community services.  Charlie looked around the room at the members of Congress, aides, and familie members, and explained, "disability is the last civil rights movement in America" and providing care and education is "a basic civil rights issue."
 
Like most military families, Haiden's family moves every 3 years.  If the medical and educational pieces are not in place, "we're already behind" when we move, Charlie said.  Every time the family transfers, they start at the bottom of a new list for care and assistance.
 
This includes being at the bottom of the list for Medicaid waivers, which help parents defer some of the tremendous expense of caring for a child with a disability.  Charlie also spoke about the importance of children with disabilities having community support and being members of their communities, just like all other kids.
 
Scott Campbell is the father of Ian, a 9 year old with autism.  Scott spoke eloquently about the need for better medical care in the military, and to provide the services and therapies that children with disabilities need.  Tricare services are often woefully inadequate, and parents cannot find service providers.  (An entire post could be devoted to Tricare issues alone.)
 
A number of solutions to these problems have been contemplated.  The parents highlighted the need for a GAO study and hearings to focus on these issues.  Transportability of IEPs is a crucial issue, as is reforming the Tricare system for medical care.  Parents were also urged to join the Congressional MilitaryFamily Caucus Facebook page and share their stories so they can be shared with Congressional Members on the House Armed Forces Committee. 
 
The parent speakers also asked the DOD Office for Family Members with Special Needs to appoint a Parent Advisory Committee. "Nothing about us without us," they noted.
 
This was a strong briefing.  I am very glad that Congresswoman McMorris Rodgers put the spotlight on these issues. It was good to see staff members listening to the issues faced by families of children with special needs.  Similarly, when parents in the audience spoke up and shared their experiences, it really drove the briefing's purpose home.
 
35 Years of IDEA: All of this for Just Some Educational Benefit?
 
At the end, Jeremy told the members of Congress and the assembled aides that military families should have the opportunity to get their children the best education–just like everyone else.  Then, I listened to my friend have to take back that statement and tell the aides that he was only trying to get an appropriate education for his 7 year-old daughter.
 
I wondered, how many more generations of first graders are going to be condemned to receiving only some benefit from their education....simply because they are children with disabilities, military or civilian.
 
What did that statement say to these military Committee aides, many of whom were hearing about special education and disability for the first time? 

Jessica Butler is the mother of a child with autism and apraxia,  who has many friends in the military.  She is also an advocate and attorney, and served on the board of directors of the Council of Parent Attorneys and Advocates (COPAA) from 2004 to 2009.  You can reach her at jessicabutler@ymail.com (that's "y" not "g").



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