From the Homefront: Navigating the Special Needs Program

Twice a month, Coast Guard All Hands will feature “From the Homefront,” a column for Coast Guard spouses by Coast Guard spouse Shelley Kimball. Shelley has been married to Capt. Joe Kimball, chief of the office of aviation forces at Coast Guard headquarters, for 14 years. She currently serves as an advisor for the Military Family Advisory Network.

Written by Shelley Kimball

Peggy and Joshua Haun with their children, from left, Riley and Lukas.  Photo courtesy of Peggy Haun.

Peggy and Joshua Haun with their children, from left, Riley and Lukas. Photo courtesy of Peggy Haun.

 

At what can be some of the scariest times in military family life, needing extra medical or development help for a family member, Coast Guard families turn to the Special Needs Program. It can be overwhelming, confusing, and in some cases, frustrating to navigate, but the end result is a lifeline to finding the necessary medical and educational assistance.

Four Coastie families have shared their experiences here to help others find their way to the services they need as easily and efficiently as possible. They are part of the more than 3,000 family members enrolled in the program.

Rachel Conley is an ombudsman for five Coast Guard units in the Washington, D.C., area. (Seriously, five. “I am very passionate for this program – I can get enough of it,” she said, laughing.)

But she is also mom to three kids enrolled in the SNP. She has a son, 12, and two daughters, 6 and 1. When her middle daughter was born, the Conleys quickly realized she had special medical needs.

Photo by Bill Keefrey.

Photo by Bill Keefrey.

“We were told about the Special Needs Program at that time, and we realized we really needed to get or daughter enrolled, which was something that was new to us,” Conley said. “But having her enrolled, not only is it mandatory, it has provided a lot of support for our family.”

And that support was waiting for them when their second daughter was born, and again they needed additional medical support for her. After that, her son was placed on the autism spectrum, so they enrolled him for both medical and educational purposes.

“It’s really an essential program for Coast Guard families who have dependents with special needs,” Conley said.

All of that personal experience has served her well in helping families in her care as an ombudsman. Conley said she finds that many families express their worries that enrolling in the program will have a detrimental effect on their active duty member’s career because it will limit the locations to which they can be transferred.

“I’m finding that a lot of them are concerned that perhaps it is viewed negatively, or it may have career implications, and that’s not true,” Conley said.

Conley describes it not only as a medical support system, but also an assignment tool that ensures that families don’t end up in locations that can’t provide the medical care they need.

“It’s handled in a very private and respectful manner, and really provides resources and support when the family needs it,” she said.

For families unsure of whether to enroll, Conley recommends reaching out to a family resource specialist in the program to ask questions – their contact information is here.

“Share the needs of your family. They can guide you through that program,” she said. “It’s really beneficial to reach out and open up the lines of communication.”

Rachel and James Conley with their children, from left, Caroline, 1, Clara, 6, and Will, 12. Photo courtesy of Rachel Conley.

Rachel and James Conley with their children, from left, Caroline, 1, Clara, 6, and Will, 12. Photo courtesy of Rachel Conley.

Once enrolled, Conley said, the active duty member’s record was flagged showing there was a special need that affected the transfer process. The assignment officer saw the flag and contacted the family resource specialist, or FRS, working with the family to gain some guidance on what special considerations that family needs before transferring. The FRS FRS then weighed in on whether the appropriate support can be provided at the prospective locations. That process is right in the middle of changing.

One caveat Conley added was that being a part of the special needs program does not preclude an active duty member from deploying, standing duty, or taking unaccompanied assignments. Her family knows first-hand – her husband will be taking an unaccompanied assignment for a year.

“We decided, you know, we could do this,” Conley said. “I think positivity is so important, especially for the kids. They are going to look to me for that, and I am going to provide it.”

Categorization Process Change

The process for determining PCS locations for families enrolled in SNP is currently being revamped, and the new process will be in effect by February 2016, according to Marta Denchfield, Ph.D., the Special Needs Program manager. The previous process, in which the records were flagged, did not describe the complexity of a family’s needs. So a new categorization program launched a few months ago.

Families in the special needs program will be assigned category numbers, based on the complexity of their medical needs. For example, a category one need might be seasonal allergies or hypertension, which would mean no limit to services or assignment locations. At the other end of the spectrum, a category five need might be complicated cancer treatment or severe cases of autism, which would require access to a major medical area that is within a 30-minute drive. Categories four and five have a specific list of locations that meet such medical needs.

The new process will allow family resource specialists to enter category numbers for families’ special needs into Direct Access. Then the assignment officers will automatically know the distance or driving time from a medical facility the service member would need from the duty station.

“With the complexity piece structured in the way described in the categories chart, the assignment officers will know how to efficiently proceed with the assignment process,” Denchfield said. “For example, they will contact the FRS only for cases that fall in categories two and three because category one can be assigned everywhere, and categories four and five need to be placed in any of predetermined locations.”

The categorization will be completed in February 2016, and it may affect transfers for some families at that time, but some families may not see a change until 2017, she said.

Denchfield added that cases will only be categorized if their documentation is updated (through DD forms 2792 and/or 2792-1, available here. If the forms are not on file by September 2015, the cases will be closed. Active duty members will need to re-enroll in the program if they still need support. Usually, the forms need updating every three years or when there is a change in support needs.

Denchfield said she hopes families will feel comfortable enrolling in the program.

“I realize that sometimes active duty members are apprehensive about enrolling their family members in the Special Needs Program, but the program currently in place is much more structured and transparent compared with the past practices,” she said.

Navigating out of frustration

It can feel overwhelming to find your way through the program, especially when you are already worried about the medical issues before you. Some Coasties have banded together in Facebook groups to share their insights and experiences with others. Peggy Haun is an administrator on the Facebook Group for USCG Special Needs Families.

Haun’s son was placed on the autism spectrum about 1 ½ years ago, which was right in the middle of her husband’s tour in Lake Charles, Louisiana. Her son has also been diagnosed with ADHD and severe allergies. Lake Charles is a relatively remote station, and there is not a lot of medical support for her son, Haun said. It is not an area families with special needs are stationed because there is little care available, she said.

Top 5

“No one gets sent here,” Haun said. “You get diagnosed here.”

She said she struggled in the beginning. At the first diagnosis, she received paperwork to fill out, but she didn’t know how to navigate the rest of the process. She said she felt as if because the Coast Guard is so small, there are fewer people available to provide families assistance. For example, she said, some districts have just one representative to handle all of the SNP case files in that district.

“We have work-life. Work-life tries hard,” she said. “But it seems sometimes they are understaffed and overwhelmed, and I feel bad for them.”

No matter what, though, she said that step one in the process is to find your Coast Guard representative.

“Go to Work-Life – that’s point A,” she said. “Call your Work-Life rep. You have to get your foundation set. That’s your caseworker.”

From there, get set up in the Special Needs Program.

“It’s a process,” Haun said. “You get a diagnosis, and you want things to go quickly, but it takes about a month or more to get set up in the system.”

Then, for the Haun family, the Tricare Extended Care Health Option was the next stop for support. ECHO is a supplementary health insurance that picks up where Tricare leaves off.

“It covers a lot of stuff that Tricare doesn’t necessarily cover, like ABA therapy or respite care,” Haun said. “We pay a copay for it, but it’s well worth it.”

Finding available medical care has added to their family’s challenges, Haun said. They had to travel great distances to find care, which means also working out how to get travel reimbursement for the trips.

“Nobody knew how to do a travel claim to go to a specialist,” Haun said. “We had to go 300 miles to take our son to a neurologist.”

She found that, unlike Department of Defense military branches, the Coast Guard handles its own travel claims. Her husband needed direct orders for a package for a travel claim. Haun said that if the trip is more than 100 miles, the active duty member needs to get the package at least two weeks ahead of the trip.

In all of this, one of her greatest resources has been her District 8 representative. Her rep helped her battle the school district when it balked at signing Individualized Education Program paperwork, and more recently looked over her husband’s dream sheet to make sure that their potential PCS stations have the medical care her son needs.

“She was a blessing,” Haun said. “She helped when I needed her to.”

Michelle Garcia and her husband Ronald Garcia with their children, from left, Brandon, Natalie, Derrick and Matthew. Photo courtesy of Michelle Garcia.

Michelle Garcia and her husband Ronald Garcia with their children, from left, Brandon, Natalie, Derrick and Matthew. Photo courtesy of Michelle Garcia.

Tips and Advice

The family resource specialists are key players in the application of the Special Needs Program, according to all four families, and all of them agree that getting in touch with the FRS is crucial.

Michelle Garcia’s family has been part of the SNP since 2010.

“Navigating special needs hasn’t been a walk in the park so it definitely helps to hear from others who have been there before,” she said. In that spirit, she offered some tips and advice:

  • Don’t be afraid to sign up for the program. Not only is it mandatory, but they will make sure that there are services available to you when you move to a new duty station.
  • Keep your paperwork updated, and do that earlier than later.
  • Be sure to keep the link to the list of resource specialist contacts handy because they move and PCS, too.
  • Be persistent. If someone in special needs doesn’t seem to be able to help you, continue up the chain and ask for supervisors. They they will help you find a solution to the problem.

 

Shelley Drisko is an ombudsman and a mother to two special needs children. She, too, has a list of tips for navigating the system, based on her experiences:

  • Enroll in the program. We have never felt that being enrolled in the Special Needs Program affected advancement or locations that we wanted to go.
  • Use your ombudsman for resources in your local area and for Tricare points of contact.
  • Maintain contact with the family resource specialist so that they have the most accurate information regarding your family, especially for the categorization process. They are also a great point of contact for resources, especially if you run into problems with the local school district or Tricare.
  • Plan ahead. About 1 year out from a move, I contact the family resource specialist in the districts we are looking at and ask about resources in their area based on my families needs. I contact the local ombudsman to see if there are support groups for my family or contacts that can help me determine if it is an area we could go.
  • When my husband submits his e-resume he only lists locations that he knows there are available resources for our family.

 

Resources:

Special Needs Program: The main homepage has links to policies, forms, and frequently asked questions.

Family Resource Specialists: A list of the SNP points of contact by district and their phone numbers, email address and mailing addresses.

Alcoast 039/15: This explains the new special needs categorization policy that went into effect in February.

Operation Autism: A resource, sponsored by the Organization for Autism Research, specifically for military families who have children on the autism spectrum.

Believe in Tomorrow Children’s Foundation Military Initiative: An initiative that supports military families with critically ill children.

Military Child Access Assistance Program:
MCAAP helps active duty service members and veterans make their homes handicap accessible for their children with special needs.

Military Special Needs Network: This peer support network provides information and resources to benefit the emotional well-being of special needs families.

Facebook groups: There are a few Facebook groups out there to help support families in the Special Needs Program. For security reasons, they may be categorized as secret. To gain access to the Facebook Group for USCG Special Needs Families, email cgsnsup@gmail.com. To join the Coastie Autism Group, email coastieautismfamilies@gmail.com.

The views expressed herein are those of the author and are not to be construed as official or reflecting the views of the Commandant or of the U.S. Coast Guard.

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