SOUTHERN PINES — For nearly the past year, Lorraine Weber has welcomed the calming presence of a respite care provider into her home to help with her son Robbie, who has moderate autism.

Robbie commands attention, yelling for his mom and tugging on her while he plays with his dinosaurs and Legos. She does her best to split her attention between Robbie, his sister Madeleine and her husband Robert, a major in the Army who is out of the state for training over the next two months.

For a few hours a week, Sharon Dyce, a respite care provider comes in, giving Weber a chance to collect her thoughts and take a deep breath.

“As much as you love your child, it’s not easy,” she said. “And then, for military families, there’s added stress. When you don’t have anyone to help watch that child and don’t get a break, you can’t be the best parent.”

But on July 1, the Army’s respite care program will be scaled back due to funding deficits. The program will be available to families most in need, as judged by an evaluator contracted by the Army, and at a reduced rate for other families.

Weber watches her son playing with a behavioral therapist on a recent Tuesday. She worries her son will regress without proper therapy and respite care.

“Every day it was like I was drowning,” she said, reflecting on time before the therapists and respite care providers. “I didn’t know if I could hang on anymore. We have been through hell.”

In 2007, the Family and Morale, Welfare and Recreation Command received $8.2 million in supplement funds for respite care through the Army’s Exceptional Family Member Program, which is available on installations around the world. Qualifying families received funding for up to 40 hours of respite care.

In 2009, funding for respite care shifted to base operating funds for Army Community Service, and was no longer supported by supplemental funds, according to the Army.

Officials were not able to track down how much funding Fort Bragg received for its respite care program.

Respite care was initiated during a period of high operational tempo to provide a brief period of relief for families who were experiencing the stress of deployment while also caring for family members with special needs, according to Stephanie Hoehne, director of the Army’s Family and Morale, Welfare and Recreation.

In a letter dated May 19 to U.S. Rep. Richard Hudson, Hoehne explained that program was supported by funding for the Global War on Terrorism.

“In the last decade, the operational temp has declined and current fiscal constrains limit the support the Army is able to provide,” according to Hoehne’s letter. “While the Department of the Army remains committed to providing quality support services to Army families with special needs, we are unable to sustain the same level of support as in 2007 when respite care was first made available.”

At Fort Bragg, 58 families are part of the respite care program.

The limited availability means many families will have to find alternatives. The Army provided each family with five alternatives in the Fort Bragg region: Extended Care Health Option Respite Care, Alliance Behavioral Healthcare, Sandhills Center, North Carolina Lifespan Respite Care Coalition and First in Families of the Sandhills/The Arc Moore.

The House Armed Serviced Committee is actively looking into funding for respite care.

Hudson represents the 8th District which includes Fort Bragg, northern Cumberland County, parts of Fayetteville and Hoke and Moore counties. Tatum Gibson, a spokeswoman for the congressman, said he understands the pressure military families are feeling.

“He believes we need to increase defense spending across the board and does not believe that this program is the best place to find savings,” Gibson said. “Congressman Hudson is working with the House Armed Services Committee to scrutinize the decision and determine if future legislative action is necessary.”

For the Weber family, their funding for 28 hours of respite care will be reduced. Weber has reviewed alternatives provided to her by the Army, but found several to be unsuitable since they are out of the area or only take Medicaid.

Weber said a respite care provider spends times with her son twice a week.

It’s a brief period of calm and peace, she said.

“Having her here is a godsend,” Weber said. “With respite, what it allows for is when I need a break, when I need to recharge to be a better mother, respite gives me that.”

Weber’s son Robbie was diagnosed with moderate autism in 2014.

The signs were there, Weber said, reflecting over teacher evaluations. It was noted that Robbie was impulsive and disruptive. He wouldn’t listen and would sometimes bite or throw objects.

Before the diagnosis, Weber and her husband thought maybe teachers just weren’t patient with their son. He was social, so he couldn’t possibly be autistic, she thought.

When the family was moved from a duty station in California to Texas, they tried enrolling Robbie in a Catholic school. But by the third day, the teacher called Weber in for a conference because Robbie’s behavior had been disruptive and affecting lesson plans for the entire class.

As Weber drove home from that meeting, she said she knew.

“It hit me like a Mack truck,” she said. “He does have autism. That’s when I got out of this stage of denial.”

Weber, like other parents of autistic children, said there was a period of mourning when she realized she was on a different path of parenthood.

She took advantage of every kind of testing she could qualify Robbie for, including genetic testing.

When she learned about the Army’s Exceptional Family Member Program, a therapist was sent to their home to determine if Robbie would qualify for any respite hours. Of the 40 hours a family could receive, the therapist authorized respite care for 28 a week.

During the respite care visits, Dyce plays with Robbie and his sister Madeleine. It’s important to keep them together, Weber said.

Robbie looks forward to the weekly visits.

“She’s loyal and helpful,” she said. “She’s really nice.”

Robbie said he and Dyce watch movies, play games and go for walks.

It’s a brief time that Weber can spend focusing on herself or with her husband. She knows she can never leave her son with a babysitter, so it’s a blessing, she said, even if she’s just sitting on the patio with her husband while Robbie plays inside with Dyce.

“I know I can leave the house and he’s in good hands with someone who understands his behavior,” she said. “It just allows the parent to recharge and have time for themselves or their marriage.”

Dyce’s presence helps the parents recharge, while giving Robbie an outlet, so Weber said she understands how valuable the program can be to other families.

“I pale in comparison when I think of other families with less functioning kids, or with multiple kids,” she said. “That’s why I’m fighting. Maybe we can resurrect this and find the funds.”

 

Staff writer Amanda Dolasinski can be reached at adolasinski@fayobserver.com or 486-3528.