In this interview, Karen Driscoll, co-founder and volunteer for ACT Today! for Military Families tells her personal story and explains why Autism benefits are so important for military families.
The goal of the foundation is to improve awareness of the unique needs of military familes living with Autism and improve access to urgently needed treatments and support services.
As a military veteran and graduate of the US Coast Guard Academy, I have numerous friends with children on the spectrum. I now understand why Autism benefits are particularly critical for military families.
I hope you will enjoy hearing Karen’s story and passion as much as I did. Please ask your representative to support HR 2288 and help military families. I donate to ACT Today! for Military Families and encourage you to do the same.
Thank you, Karen.
Transcript
Kevin: Hi, I’m Kevin Dewalt, founder of Puzzle Ribbon. Today I’m going to interview Karen Driscoll, co-founder and volunteer for ACT Today! for Military Families. Karen is married to Colonel Jerome Driscoll, U.S. Marine Corps, and is the mother of three children, one of which is on the autism spectrum.
The goal of the foundation is to improve awareness of the unique needs of military families living with autism, and improve access to urgently needed treatments and support services.
On a personal note, I’m also a prior military member myself, and have a number of friends and family with children in the spectrum, so I’m especially excited to interview and meet our guest today.
Karen, thanks for joining us.
Karen: Thank you for having me, and thank you for helping raise awareness about the challenges our military families are growing through.
Kevin: The pleasure’s all mine, Karen. Tell me a little bit about your story. What made you go from being such an activist, and creating an organization, and doing all the wonderful things you do. All the people in the autism community speak so glowingly about you, and you’re so highly regarded. People just want to know about you and your story.
Karen: I think, like any parent, and especially the autism moms, we find ourselves in a situation where we’re having to advocate for positive improvements. In my case, my son was diagnosed with autism at age three. We were living in California at the time. My husband deployed to Iraq a year later. Dealing with the challenges of a deployed spouse, as well as the day-to-day challenges of autism, it really brought some thought process to me, at home, as to, “Wow. There are some deficits in terms of how to assist families with special needs.”
It really hit home when we left California, soon after my husband came home from Iraq, and we moved to northern Virginia, where he was assigned to the Pentagon. When we were in California, we had a comprehensive treatment program of close to 25 hours a week for my son.
Kevin: That was through the RFCs, or how did that work?
Karen: That’s a really good question. It was really compiled by various funding sources.
We had the school district providing roughly half of what my son needed. We had TRICARE, which is our military health care system, providing some limited coverage. Then we had the Regional Centers in California, which, roughly explained, is California’s version of the Medicaid waiver program. It was compiled of three funding sources.
When we left California, and moved to Virginia, I literally went from 25 hours a week of vital, urgently needed therapy for my son, to literally zero. That really highlighted, to me, some of the continuity of care needs of the mobile military family.
Nothing happened to my son’s autism, but when I crossed state lines, access to services really became a huge challenge to us. Especially when you look at having to re-apply for Medicaid waiver programs, having to re-navigate the complex maze of services, whether it be in the medical system or in the special education programs – it was really complex.
I have a master’s degree. I have an advanced education, and I would say I was pretty seasoned and well-experienced in the Marine Corps life, yet this was hard for me. So I began to reach out to other families going through the same things, and asking, “What is needed for our families, today?”
So I began to educate our senior Marine Corps leadership, and show them the continuity of care needs, and access to care issues, the mobile military family with disabilities may experience.
Kevin: I’m thinking back to my own process in the military. It’s funny, this never really occurred to me, but you’re dealing with a much tougher situation than civilian people would, with a child with special needs, because you’re being told, “You have to move today.”
You go where you’re ordered to move. You have a lot less control over that. Someone in the civilian sector, they find a therapist they work with, they go through this god awful process of getting it funded and if it’s not done, they at least reach some sort of steady-state equilibrium.
In your situation, you’re told, “Hey. Not only do you have to move, and have the stress of dealing with that move, and having three young children but, on top of that, you have to re-educate yourself, and do the whole process all over again.”
Karen: Also, given the economic climate at the time, most states had wait lists for Medicaid waiver assistance. So what’s happening, for our mobile military families, is that they’re going from bottom of wait list, to bottom of wait list, to bottom of wait list, never, effectively, receiving any assistance from the state.
I happened to be very lucky, at the time, to be in California where, legally, you cannot have a wait list. But, even since that time, California’s laws have changed significantly, so now I don’t even qualify for services from the state.
The continuity of care is broken, and treatment gaps in services, for our families, are experienced on a regular basis.
So I began working to educate our senior leadership about those challenges, and providing, I would say, positive recommendations on what we can do to address that, mostly focused on policy and, mostly, focused on autism, because that’s what I know.
But, I believe, that many of the issues impacting the family with autism are comparable to many other patient populations, access to care, access to specialists, Medicaid waiver programs and special education services. By highlighting autism, I was able to open our leadership’s eyes to what these families experience.
Having a disability is a natural part of our human existence. I get the question all the time. “If it’s so hard, why doesn’t your husband get out of the Marine Corps?” Well, frankly, because if he gets out, there’s somebody coming right behind him with the same issues.
When you talk about the military family, you have a very unique set of key issues you have to address. It’s military readiness, military retention, but also our moral obligation to the military family in providing the services and health care that they require.
My husband’s a helicopter pilot and, when he was in Iraq, his primary mission was casualty evacuation. He’d go into a combat zone, he’d pick up our injured, and carry them to safety and care. You don’t want that Marine worried about his $5000 therapy bill that month.
Kevin: Absolutely not.
Karen: You want that Marine focused on his mission. That’s what we talk about, family readiness, military readiness. It’s important for the war fighter overseas to be focused on what he’s doing. That really brings the importance of our military leadership to focus on our families here at home.
There’s also the retention aspect of a quality, all-volunteer force. My husband has 25 plus years experience, three master’s degrees, helicopter pilot, and combat commander in two wars. You can’t replace that Marine overnight.
Kevin: No, it takes 20 years.
Karen: It takes 25 years to replace that Marine. Again, having a disability is part of our natural existence. It’s a matter of embracing what these families need, providing them the services and support so that we can protect that readiness and retention, and meet that moral obligation. It’s more than just our typical civilian families.
Kevin: That’s a fantastic summary. There are definitely parallel issues between what companies face, and what the military faces: employee productivity, and retention, and the moral obligation we have to helping people.
But, clearly, just hearing you talk through these situations, and knowing what I’ve experienced, and what my friends and family have experienced, it’s magnified in the military, just with the nature of the stress of the job and the number of times you have to move.
Being a military family is hard enough as it is. There are so many sacrifices. When you put this on top of it, it must be nearly overwhelming for people.
Karen: Think about autism. Autism is unaffordable to 99.9% of our population. It’s simply unaffordable. Access to the appropriate care and treatments is vital for, not only for the well-being of the family, but for the future and success of the individual affected.
But when you talk about the military family, and providing those services for their children, it is essential for our country’s security, and our mission overseas. So I began to recommend some very positive improvements to our TRICARE policy, which covers limited amounts of applied behavior analysis.
Kevin: Through the ECHO program?
Karen: Through the ECHO program.
It’s not what it needs to be. ABA is long-established as an effective and mainstream treatment for autism, yet TRICARE segregates it out of the current TRICARE program into a separate arm of TRICARE requiring additional enrollment eligibility criteria, and it actually sets a limit on the amount of a child’s treatment program.
If we are unable to access state services, or having challenges through the school district, we’re limited on the TRICARE piece. What happens to that mobile family is, we’re never able to access the recommended standard of care.
I began to recommend TRICARE policy improvements. We’ve seen some baby steps, with the help of Congress. Again, it’s not where it needs to be. Recently, we introduced legislation advocating bringing applied behavior analysis, and other evidence-based behavioral help treatments, into the regular TRICARE basic program as a medical necessity, and providing for prescribed level of care.
That’s called the Caring for Military Kids with Autism Act.
Kevin: The Caring for Military Kids with Autism Act, HR 2288. If somebody just goes on the web and searches for “HR 2288″, can they find information about it?
Karen: Absolutely. It’s actually out there. It’s published by the Library of Congress.
With the help of Autism Speaks, we’ve been able to help reach more of a population out there. There’s a military web page on autismvotes.org as well, and I believe there is a copy of the legislation there as well. We’re asking families to call their congressmen and ask that they sign on as co-sponsors.
Kevin: I’m a fan of the military family, either I’m passionate about this because it’s the right thing to do, or I’m a friend of a child or a family member in the spectrum. When this legislation passes, and I’m going to speak in optimistic terms, what would be the change that families could expect? What’s the goal, and how will it impact families?
Karen: My question all along is, “Why are we segregating out medical treatment into a separate program, requiring additional enrollment and eligibility criteria?”
To bring ABA into the regular TRICARE basic program, it would eliminate current barriers in the system. I hope it will provide more timely access to care, as well as eliminate dollar caps on services.
Right now, TRICARE provides roughly $36,000 a year of ABA therapy which, under current billing rates, is about, roughly, on average, across the nation, maybe 11 hours a week. So, that’s less than half of what is medically recommended for a two year old newly diagnosed today. And so, it will provide for a prescribed level of care.
In addition, because of the eligibility criteria on the ECHO program, it will provide access to all TRICARE eligible dependents, meaning retirees; guard reserves, who are TRICARE eligible; will also have access to these vital services.
Kevin: If I had to summarize this, it’s expanding coverage to more members of the military family?
It’s expanding the coverage itself, in terms of what families actually need in terms of hours of ABA therapy, and it’s also just making it easier for people to get into the system, so they don’t have to work with somebody like Scott Campbell, who’s created a fantastic pamphlet of pages, and pages, and pages of information on what families can do.
I have to confess, if I’d be in a family in that situation, I would find the whole thing pretty overwhelming.
Karen: I don’t like to put it in a context of expanding current benefits. In my opinion, it’s bringing coverage of autism in parity with other chronic health care conditions.
Kevin: Great point. Excellent.
That’s the legislation. Can you tell me a little bit more about the foundation, and how you help military families? Some examples of success stories, or what you do for families?
Karen: As you talked about, autism is extremely expensive.
I would say the emotional and financial tolls autism brings are very personal to me. We’ve paid thousands and thousands of dollars out of pocket for my son’s treatments. My husband’s a colonel, and this is unaffordable to us.
Recognizing the importance of, I would say, community and non- government organization support, I reached out to an organization with like mission. ACT Today! Autism Care and Treatment Today is a new non-profit, launched about five years ago.
I reached out to Nancy Alspaugh-Jackson, their executive director, and I said, “Here’s the issues facing our military families. Would you be willing to launch a program dedicated to our military families, in honor of their service and sacrifice? But also recognizing America wants to help our military families, and here’s a very positive way we can do that.”
Nancy’s father’s a retired Marine. She said, “Absolutely, but we’re brand-new. Give me some time.” About two years later, she called me and she said, “We’re ready. We’re ready to launch this program.”
Kevin: Fantastic. Awesome.
Karen: It’s called ACT Today! for Military Families. It’s a program of ACT Today! but you can go to acttodayformilitaryfamilies.org, and families can apply for a family grant. We pay the providers directly.
With the application, they apply for a certain service, and give their provider name, and we work to negotiate a lower rate, and try to stretch the value of our non-profit dollars.
We’ve been in operation now for a little over a year, and we’ve helped over 50 families with direct assistance for ABA therapy; biomedical interventions; legal services; as well as social skills. We just provided one of our first grants for an assistance dog.
The mission of ACT Today! is, obviously, to build autism awareness and supports, but really, our focus is, how do we help lighten the load of our brave military families?
Kevin: That’s fantastic, Karen. Do you also help the families get through the ECHO program, and manage that as well, so they can get the services that TRICARE offers? Or do you come in after that point?
Karen: I do some parent-to-parent outreach, but that’s not in a volunteer capacity for ACT Today. I do help one-to-one, parent- to-parent, and put them in contact with the appropriate personnel at the contractor level, whether it be TRICARE managed by three contractors nationwide, so I help them get in touch with the ECHO program case management system.
It’s not an easy process. There is some improvement, nationwide, through our military’s Exceptional Family Member Program, EFMP, where each branch of service has a family program dedicated to assist families in need like that. It’s helping them find those resources in their community, and local area, as well.
Kevin: Well, Karen, you’ve sold me. I’m going to donate.
Karen: Our mission is to assist military families and again, as I like to say, help lighten the load. It’s not a fix, but it does provide relief to families, and improves the overall quality of life.
We have two big events coming up, if you find yourself in California. Next week we have a golf tournament for ACT Today.
Kevin: I’d love to be in that. Unfortunately, I’ll be on the East Coast. Otherwise, I would be there.
Karen: That’s September 12th, so if you’re interested in golfing in California, go to act-today.org, and learn more about our golf tournament.
In April, being Autism Awareness Month, and also the Month of the Military Child, is our biggest event to highlight our military family program. We have a 5K, 10K event in San Diego, a walk-run, as well as a Family Resource Festival. It’s fun for all ages, and it’s really a good time.
Last year was our first event, ever, and we had over 1200 attendees, 100 volunteers, from all over San Diego, coming to assist. It was really inspiring to watch the San Diego community come out and support our kids.
Kevin: That’s fantastic. I always look for any excuse to come back to California, so I will definitely try to be there in April.
I have to say, Karen, before this conversation I did not fully appreciate how much more challenging these issues are for military families. I’m definitely donating. If other folks like myself want to donate to ACT Today! for Military Families, do we go to the ACT Today! for Autism website? Are there links there?
Karen: At ActTodayForMilitaryFamilies.org, there’s a “Donate Now”. If you have a corporate organization, we’re looking for sponsorships, ongoing support from community organizations for our events.
There are many ways America can help rally behind this program. Search our website. Learn more about the need. We need America’s help to continue this mission, so thank you.
Kevin: You’re welcome. You absolutely have mine.
For those watching this, I’ll be happy to include all these links in the show notes, so that you can go directly and donate.
Karen, thank you so much for your service. Thank you for your family’s service. Thank you for your passion and support of military families in this campaign.
It’s been fantastic getting to know you, and I look forward to seeing HR 2288 get passed, and hearing more about your future successes.
Karen: Thank you, Kevin.
Kevin: Enjoyed talking to you, Karen.
