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Special needs program gets mixed reviews

Jul. 10, 2010 - 09:11AM   |   Last Updated: Jul. 10, 2010 - 09:11AM  |  
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For three years, Tech. Sgt. Deven Gates had tried to find out why her 5-year-old son wasn't talking.

She took him to military doctors at age 2. One told her that Connor, whom Gates and her husband had just adopted, was reacting to their inexperience as parents. Another was sure his silence was in response to Gates leaving for work every day. The only choice, he said, was to pray for their little boy.

Then, Gates saw an episode of "The Oprah Winfrey Show" devoted to autism, a behavioral disorder. She decided to have a civilian doctor check Connor. Her hunch ultimately proved right: Connor, by this time 5, was diagnosed with autism and fetal alcohol syndrome.

Gates was a perfect candidate for the Air Force's Exceptional Family Member Program, which identifies families with special needs and considers those needs during the duty-station assignment process. But she had never heard of the program at the time of Connor's diagnosis not in briefings, not during visits to doctors.

"Nobody is responsible," said Gates, now stationed at Davis-Monthan Air Force Base, Ariz. "Who is watching this? It's treated like a thorn in the Air Force's side just something to be dealt with."

More than 16,000 airmen are enrolled in the service's Exceptional Family Member Program with varying stories of the program's effectiveness and the cooperation provided by the chain of command. About 30 weighed in when asked their opinions of the program.

Most criticized the Air Force for its inattention to special-needs families; a few, though, praised the service.

Staff Sgt. Angelina Wann couldn't say enough nice things about how her supervisors and the program helped her after her son, Anthony, was diagnosed with epilepsy and Asperger's syndrome, a neurological condition characterized by communication difficulties.

"The Airman and Family Readiness Center seriously held my hand the whole way through this tough time," Wann, of Travis Air Force Base, Calif., wrote in an e-mail. "Even if I called 50 times a day, they were always friendly and willing to help with answers. If they did not have the answers or resources, I was always pointed in the right direction."

EFMP, though, has major shortcomings, according to an Air Force inspector general report. The investigation, prompted by a complaint on behalf of 16 families, found installations do not have a full-time designated special-needs coordinator, installations are not providing access to special education services at new duty stations and the Air Force lags behind the other services in its support of families with special-needs children.

"The current level of support to these families is not consistent with the Air Force's No. 2 priority: Develop Airmen and Take Care of Their Families," concluded the investigating officer, a major whose name was redacted in public copies.

In response to the report, the Air Force said it intends to add full-time coordinators at 35 bases stateside who will help link families with information on medical, educational and social services, according to a service official who helps oversee the program. The plan, set to be put in motion in fiscal 2012, still needs the approval of Air Force Secretary Michael Donley.

"We hear the people, and we're going in a direction their needs dictate," said Linda Stephens-Jones, assistant deputy for family programs.

Lawmakers, too, are paying more attention to special-needs families. The House version of the fiscal 2011 defense bill calls for the Government Accountability Office to monitor the military's handling of special-needs families.

The oversight came in the form of an amendment introduced by Rep. Cathy McMorris Rodgers, R-Wash., who is married to a retired Navy officer and has a son with Down syndrome.

"When a person joins the military, it's not just the individual who joins," said Rodgers, who is co-chair of the Congressional Military Family Caucus. "It's also their family."

A complaint, an investigation

Jeremy Hilton is a retired Navy officer married to a Pentagon-based Air Force major and is a stay-at-home dad of two 6-month-old Jack and 7-year-old Kate.

Jack is the picture of health. Kate, though, was born with hydrocephalus, an abnormal accumulation of fluid on the brain, and an assortment of other medical conditions.

Two years ago, finally fed up with what he perceives as inadequate treatment for his daughter, Hilton turned special-needs advocate.

"The rules are in place, but they've been largely ignored for years," he said.

Other parents complained to Hilton about the treatment they received from EFMP coordinators, who had other duties as well. A chief concern: Many didn't understand how the program works and treated them like a burden.

Hilton filed a complaint with the Inspector General's Office on behalf of 16 families, accusing the service of not following the Air Force Instruction that addresses special-needs services. An investigation substantiated three of Hilton's four allegations:

The Air Force does not have specially trained special-needs coordinators and the coordinators it does employ have other unrelated duties.

Families interviewed by the investigating officer reported most bases had "no one for them to turn to, and the few bases with a [special-needs coordinator] were performing the role as an additional duty."

The person assigned as a special-needs coordinator changed often, according to the report, and many were not trained or experienced with special-needs matters, which often meant "little to no community support or information provided to the families."

The Air Force is not assisting families with access to special-education services.

The service has a program called Family Member Relocation Clearance that is supposed to link families with medical and educational resources when changing duty stations. The families interviewed for the report contended the program is more paperwork than support.

"The lack of a trained coordinator at every installation to coordinate the appropriate educational services for special-needs family members adds tremendous stress to the relocation process," the report stated.

The Air Force lags behind its sister services in the help it gives special-needs families, including respite-care support. For example, the Army provides families with 40 hours of respite care a month, and the Marine Corps has an attorney who specializes in special education.

The Army, Marine Corps and Navy have a dedicated EFMP manager at the headquarters level and field staff to provide family-support services.

Not substantiated was Hilton's allegation that EFMP lacks independent oversight. The report, however, said the Air Force Inspection Agency's Health Services Inspection oversight is "not thorough enough as it does not capture the effectiveness of the program's ability to adequately support the families."

Stephens-Jones, the family programs assistant deputy, and Eliza Nesmith, chief of airman and family services, would not comment on the report but laid out actions the Air Force has taken to improve its support of special-needs families, including identifying gaps in service, collecting opinions from families and meeting with special-needs parents.

"All the senior leaders are receiving briefings on what we need to do better," Nesmith said, "and it seems EFMP has resonated with them."

Songs of high praise

For many airmen, EFMP allows them to continue serving their country.

Tech. Sgt. Katherine Aronin of Scott Air Force Base, Ill., has a 3-year-old son who is a heart transplant recipient. Born with Long QT syndrome, a heart rhythm disorder, Jackson received his new heart when he was only 5 weeks old. His health problems have delayed his physical and speech development.

Aronin enrolled in EFMP and decided to "homestead" at Scott. The only time she misses work is when Jackson needs to stay overnight in a hospital.

"From my commander down to my trainees, everyone has treated us with respect and thoughtfulness," wrote Aronin, a supply and training liaison. "Calling your [first sergeant] in the middle of the night because your child is so ill, and hearing him say, ‘Don't worry about anything except for him' is reassuring."

Tech. Sgt. Joseph Cummings, too, praises the care his 7-year-old son, Ian, is receiving for autism and attention-deficit hyperactivity disorder. Ian has been "very, very well taken care of" by his teachers and the doctors at Brook Army Medical Center, Texas, he wrote.

"The Air Force goes out of its way through programs like EFMP, special education and the like to make sure those children who need assistance have access to it, and my supervision has always been supportive when I needed to be there for my son and family," said Cummings, who works at the Air Force Personnel Center.

Wann, the Travis staff sergeant, first noticed behavioral issues in her 4-year-old son, Anthony, when she deployed last year to Afghanistan. The aerospace medical technician said Anthony was "becoming dangerously physical by hitting teachers and students, throwing desks and chairs and spitting in the teachers' faces. It was a nonstop nightmare of behavior issues."

Anthony was diagnosed with epilepsy and Asperger's syndrome in January after months of medical appointments. She praised her chain of command's attitude as amazing during this time, adding that even her squadron commander has been supportive.

"Each has provided an enormous amount of support and understanding by sitting with me to discuss our plans," she said. "I have been given the needed time for all his appointments, trial periods at school adjusting to medication, and behavior issues. I was provided with the tools to help my son cope with his new tribulations and classes for me to be able to parent him the appropriate and effective way."

A tangle of red tape

The unhappy parents told Air Force Times tales of bureaucratic sluggishness and, less frequently, troubles with uncaring members of the chain of command.

For Gates, who has since adopted another child with special needs, the Air Force's inefficiencies hurt her family financially. She and her husband, also an airman, received orders to transfer to Japan. She struggled to get her children medically cleared; the office that processes the paperwork wouldn't accept her applications for months.

When the couple finally received a decision that Connor couldn't go because he doesn't understand "the concept of safety" the family's move date was only 12 weeks away. The airmen had sold their SUV and camper. Their house was on the market.

Gates told Air Force Times she believes the Air Force's failure to provide adequate services, particularly oversight, has hurt their careers and could even hurt their children.

"Because we cannot PCS overseas we remain at the top of the list … for short-tour remote assignments, which would have a hugely negative effect on our family. Because my husband is military, we have this burden placed on us times two," she wrote in an e-mail. "Other families can avoid short tour remotes by volunteering to PCS overseas; we cannot do this, which means we are basically sitting ducks waiting for the Air Force to come down and send each of us out for a year at a time, in addition to our deployments and [temporary-duty assignments]."

Capt. Robert Adamis welcomed his daughter, Mia, into the world almost 18 months ago. Born with severe respiratory problems, Mia spent the first weeks of her life in the neonatal intensive care unit at a hospital near Creech Air Force Base, Nev. Shortly after leaving the care unit, she was moved to a recovery center with full-time medical attention in San Jose, Calif., where Adamis' in-laws live.

Adamis tried for months with his commander's support to transfer somewhere closer to San Jose, such as Beale Air Force Base. Adamis couldn't find a job as an operations analyst, so he accepted a position as an ROTC instructor at Sacramento State University, still 90 miles from San Jose.

"EFMP sounds like a good concept," he wrote, but "for cases like ours, it is ineffective to deal with our family's needs."

Today, Adamis sees his family on the weekends and is trying to transfer to San Jose State. He didn't know EFMP probably could have helped him get the transfer until weeks before he moved. When he did ask to speak to a personnel manager on base about the program, he never heard back.

Col. Dave Cohen has an autistic son, Benjamin. He and his wife had few complaints about EFMP when they lived in the Washington area. But when Cohen received a new assignment in Tampa, Fla., he found the process to be "kind of a paperwork drill."

Cohen spent hours researching which school district was the best for Benjamin and which health care providers would take Tricare and its autism care subcontractor.

"It wasn't up to the standard we had come to expect," said Cohen, whose daughter, Hannah, has Asperger's syndrome. "We had a lot of questions no one in the military could answer."

Last year, Cohen lobbied Lt. Gen. Charles Green, now the Air Force surgeon general, for a "clearinghouse" person on each base who would be knowledgeable about the issues facing special-needs families.

"We talked for an hour," Cohen said, adding Green has contacted him several times for more information.

For Cohen, Green's interest is evidence that the Air Force is becoming more aware of special-needs families.

"We're getting there," he said. "We're not there yet, but there does seem to be an additional push by the Congress and by the Air Force to get things done."

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