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Special Edition: Title V Technical Assistance MeetingExpand Special Edition: Title V Technical Assistance Meeting
Title V Technical Assistance Meeting

 Real Life Stories

CYSHCN and Oral Health

A visit to the dentist can be challenging for any parent. Add a child with special health care needs to the equation and it can become infinitely more difficult. Following are real life stories from parents of children with special health care needs and how they challenge the system to get the care their children need.
Loni.jpgBy Loni Jorgenson, Iowa
As the mother of a daughter with autism I know managing oral health for special needs children can often be challenging. As my daughter has gotten older she has been better able to cope with having her teeth brushed. When she was younger, she would often gag while having her teeth brushed. I found using a finger toothbrush with soft silicone bristles was often helpful to help prevent sensory issues. Using social stories with pictures and rewarding children with stickers or other simple incentives also can be helpful. Once my daughter was able to cope with using a typical toothbrush, she liked going along to the store to help pick out her own toothbrush with her favorite character. Some children prefer electric toothbrushes since the vibration can help distract them from the brushing. There also have been times when my daughter disliked the taste of the toothpaste she was using, which can make brushing even more difficult. There are many flavors of toothpaste available; have your child pick a flavor they enjoy. The best solution to managing oral health is to experiment and find which methods work best for your family!
Mariana.jpgBy Mariana Murillo, California
Getting basic oral health care for a child with special needs is costly in both time and money, even for families who have insurance coverage. In California, for families with Medi-Cal the challenge begins with finding providers who are willing to provide basic services. What's surprising is when a family has dual coverage; the process can be just as formidable. When extensive care is needed, the perseverance and tenacity of parents play a large role in getting children with complex health care needs the dental care they require.

Our family entered into the labyrinth of accessing care for our son Oscar in 2012. Oscar is covered through both private and public insurance benefits. Oscar is 17 years old, non-verbal and has cerebral palsy. He began waking up in pain and through a process of elimination we figured out that, like typical teens, Oscar needed his wisdom teeth removed. Due to Oscar's complex medical needs our experience in accessing care was far from typical. Oscar required hospitalization and general anesthesia for the surgery.  After consulting specialists in four cities, it took us nearly a year to find a provider who would do the surgery.   Feeling like we were finally making headway we soon learned that our insurance denied the hospitalization. [We later learned that the authorization was not granted due to an error in coding when staff at the doctor's office completed the request. Providers, train your staff!]

In desperation, we found another  doctor who agreed to do the surgery. He did not accept Medi‐Cal, Oscar's secondary insurance, but extended us a reduction in rates. The day before Oscar was to enter the hospital, the surgery was cancelled.  The anesthesiologist felt that the hospital was not equipped to care for Oscar in case of emergency.

In 2015, 31 months after the initial diagnosis, surgery was successful.  We paid out-of-pocket for most of the services.  We were denied financial assistance by two state funded agencies charged with the job of providing care and service coordination to help families with children with developmental disabilities and special health care needs. They reasoned, "All children this age have wisdom teeth problems and the needs were not related to Oscar's developmental disability." If that's the case, why did it take almost three years to get his needs met?

It's been nearly three months and Oscar is doing well. As a parent, I've worked as Oscar's case manager since his birth and as a parent mentor to families for almost 15 years. Providers who recognize the needs of children with complex health care needs must be recruited to fill the enormous needs. Providers need staff trained on how to properly request authorizations. Hospitals need to open the doors to oral health care providers. Coordination of care is critical, family support and system navigation is a must. Lives depend on it.
Nold.jpgBy Teresa Nold, South Dakota

Living in a rural state as South Dakota, access to medical care can be a challenge. Add in a specialty such as Dental or orthodontia care, the challenge is doubled.

My son has multiple disabilities – cerebral palsy, Moebius Syndrome, Trigeminal Trophic syndrome – a combination of these has led to several health issues. When he was younger, we had no problem locating a dentist who works with South Dakota Medicaid. Over the years, as his teeth were growing and changing, we felt that we should consider some orthodontic work. His dentist would reply each time we ask "oh, but he's got disabilities," and would end the discussion with that.

We still felt like something could be done. We saw a different dentist… and with her support, we began to make phone calls. We were referred to a clinic that would put our son on a waiting list up to a year. A year?! You're kidding. We began to call other private practices. It was so disheartening to give them all the information then the conversation ends with "who's his insurance provider?" "Medicaid" we answer. Then we get the "Oh we don't work with Medicaid" sympathy talk. We then contacted the state office of Medicaid and asked if they would support us going out of state. We said our son deserves a choice with immediate access to quality care. There was some hesitation. Our phone call ended with the state office doing some checking and will get back to us. We later received a call from them saying Medicaid will approve going out of state. So challenge solved? Not really.

We go to Minnesota for his orthodontic care and are still in the middle of it all. The doctor and staff are terrific to work with. We had a bit of an emergency one weekend. I made a few phone calls to local orthodontists to see who was available. One said he could meet us in 30 minutes. But then once he discovered he wasn't a patient of his and that he has Medicaid? "Oh, I can't work with him because I wouldn't get paid." Come to find out, Medicaid has paid the clinic in Minnesota a lump sum up front for care for our son. Because they did that, we can't go elsewhere. The emergency? He was just fitted with braces and a bracket came loose, all we needed was a dab of glue to put the bracket back in its place. Instead, I ended up on the phone with the orthodontist from Minnesota guiding me to slide the bracket out and cut the wire with a fingernail clipper.

An additional challenge for us as a family, three out of the four of us are Deaf. Finding a dental clinic willing to provide an interpreter is pretty difficult in South Dakota. In Minnesota accommodations are provided, no questions asked. We are so grateful for that. Our son is able to participate in his appointment, and we are able to function as parents and not interpreters.

My biggest advice to parents? Your kids deserve access to quality care regardless of type of insurance. Start asking questions, challenge the system. They need to hear where the problem areas are.


For professionals:

For families:
Handouts from Special Care: An Oral Health Care Professional's Guide to Serving Young Children with Special Health Care Needs