There are significant challenges to ensuring health care access for children and families with special needs here in our rural, medically underserved state. As part of the project, Including All Kids: Transforming Health Care Systems for Children with Special Health Care Needs in West Virginia, we created a series of survey tools for parents/caregivers to learn more from those accessing services in these systems: What’s working? Where are there challenges? What can we do to help? 

Here are the results to date, with 100  respondents completing survey #1 in the series. If you know of anyone who would like to participate in the project, please link them to the project website

What county in WV do you live in?

To date, we’ve received responses from 32 of West Virginia’s 55 counties. 

How would you rate the amount and quality of assistance you’ve received from the health care system to navigate it?

Have you ever had a doctor refuse to provide care for your child?

Have you ever had any other kind of health care provider refuse to provide care for your child?

Have you ever been waitlisted to receive health care services?

As your child has aged, have you experienced a decrease in available services and supports?

Do you have difficulty keeping your child’s medical records intact?

Have you ever received help from health care employees identified as “care coordinators” or “service coordinators?”

What is the biggest barrier to accessing health care for your child that you’ve experienced?

Do you have any additional information you’d like to share about your experiences in accessing health care for your child or children with developmental disabilities in our state?

Do you have a recommendation as to how to improve the health care system for children/families with developmental disabilities?

  • We need To recruit more peds docs.
  • Training more people and parents. More autism support group.
  • More skilled providers in this area so we don’t have to travel 2/3 hours away.
  • More competent providers. We’ve never been denied care but have had to wait for both physical and occupational therapy. We tried to see a neurologist closer to home and he was completely uneducated about my daughters condition.
  • More providers needed in Our state.
  • Easier access to information, more opportunities to get the care your child needs.
  • More preferred doctors that are connected with the autism community.
  • I know personally that trying to get the board of directors to help the disabilities community grow and always shut down and that is if you get the chance to speak to them. I am on the boards of a few organizations that work for the disabilities community and cannot get a partnership from our own healthcare to help these programs grow that not only help people with disabilities but help our community as a whole. A win for everyone.
  • Offer a coordination of care person or group that can present the child as a whole rather than mom being the one to relay information between specialists.
  • More parent support. Peer parent support would also be helpful. And multiple ways for the process to be available. I can’t tell you how many tears I cried waiting for my son’s waiver number to become available. The impossible can be possible if there is a new approach to providing assistance to these families. The families don’t care about the politics of it they just want help.
  • More training and more services for those in need. We finally were able to find a placement advocate for our son who had a lot of issues, and he was sent out of state.
  • We need more therapy centers in the state that utilize ABA therapies.
  • TRAINING on PBS and Autism Training would be greatly appreciated and like I said more/better resources in the Eastern Panhandle. Also just because my kid is not eligible for Title XIX due to his “scores”, why should he be penalized for services that he truly needs. My son still has medical expenses and therapies that he needs due to his disabilities and we struggle to pay these bills. It’s not fair to him just because he’s higher functioning and pass ABAS 3 guidelines.
  • Speed up insurance process
  • Have more pediatric specialists available
  • I wish thr aba would be covered by the insurance. Its a big help for my children with asd and adhd
  • Find people that they can talk to, folks who will give them information or maybe just listen or cry with them. Having a child with special needs is very difficult, but it can be very rewarding as well. I would not trade my son in for anything in the world, but it would have helped if I would have had someone to talk to.
  • More ABA therapist and more developmental pediatrician
  • listen to the parents needs and not make it hard for the workers to apply for the adaptive equipment and needs of the children instead you send everyone on goose chases only to be told in wv there is no vendors for beds which i find totally irresponsible for the state.
  • Find Healthcare provider that actually care and aren’t just out for money
  • More Dental and psychological services medication management
  • Hire people who care and are educated about disabilities of all kinds. Providers must have understanding and compassion.
  • Have more specialists
  • Get good specialty providers in the state, don’t waste time or money of services that have to be “ approved” just to get help. Make it more simple for families that are already struggling, don’t make it more difficult.
  • More access to all providers, more providers with expertise in this field and shorter wait lists.
  • More support for parents
  • A flow chart or something similar to those just starting to navigate through to know where to go and what they qualify for
  • Kepro and BMS have to much say in what goes on with those with IDD diagnosis. They are too far removed from the actual services. They write policy and manuals with little input. I know they provide an open comment period but many families do not understand what they want or how to communicate what they need. BMS needs to actually go out into the field and have some hands on experience several times a year.
  • More accessibility for teenage children, adults, such as restrooms, with a changing table
  • Healthcare systems need to remember that not every person is a cookie-cutter situation doctors nurses staff like I need to be aware of these differences we also need more options regarding behavioral and mental health centers
  • Include more disabilities in the dhhr program titled “Children with Special Health Care Needs”
  • The state needs to require all health care professionals to have special training to help children and adults with disabilities.
  • Require proper diagnosis through public schools and increase funding to professionals providing services to children with special needs
  • All basic needs are met with insurance coverage without a hassle. All medical and therapy covered. It’s CRUCIAL these kids have therapy, and so many can’t because the family simply can’t afford anything out of pocket . This should t happen to ANY CHILD, this is AMERICA in 2021.
  • Stop not allowing out of state providers when the providers here have no knowledge of the specialties we need
  • first they need to be able to get to their appointments
  • With schools moving birthday cut offs to earlier, there’s a bigger gap between services like birth-3 and then what they’ll receive at school. There’s not much for help for the 4-5 yr age range.
  • Looking back I think more could have been done earlier on by his doctor to help us get a jump on his speech delay. I also feel my niece his mother was poorly informed about why he was speech delayed and after the Kluge center diagnosed him as being global developmental delayed he was on the spectrum he received IEP at school but I never felt like it was enough for the family to understand how to help him or exactly what was going on.
  • we need more providers to accept the insurance.
  • Communication and stop waiting to take action. The earlier a child can Start receiving the services they need, the better. Whether it, pt, ot, counseling, or a referral to a specialist no one should have to wait. Waiting causes more issues and becomes harder for that child to over come.
  • Provide public transportation
  • More services available
  • Service coordinator would be great for every family…. I have never heard of them except through the social services through the DHHR.
  • More availability of services. Information on what services are available.
  • I don’t think health care for those with disabilities should be treated under a blanket coverage. Each case is different.
  • Healthcare for all.
  • We need to offer more pediatric specialty medical providers from ophthalmology to rheumatology to pediatric PT and OT. Also, ultrasound-guided blood draws should be available for routine labs when needed.
  • It would be nice if there was a service that would provide both information and coordinators to help families and children coordinate different medical cares and needs.
  • Train medical students in the care of adults and children with disabilities
  • Evening and weekend office hours need to be available.
  • Improved training for Doctors and nurses and support staff on the needs of the disabled and their families.
  • Allow Medicaid kids to get mental health and to allow the children to go to children’s national in dc without prior authorizations. And to cover genetic testing without having to fight with Medicaid over the necessity to have it done.
  • Need more information about transition to adult care, what age, who to consider for primary care of an adolescent with I/DD
  • Awareness. Parent Dr conversation opportunity. Specialty in areas relevant to diagnosis
  • Recruit more service providers
  • The most help I have received has came from other parents. The best analogy I have is that too many professionals want to put a square peg in a round hole. Health care must be individualized. Unfortunately insurance guides healthcare, not physicians. Basically insurance and those who regulate systems decide who lives and dies.
  • Get a children’s Hospital down here like Ohio and can spent time on the drug addiction.
  • I don’t know the answer. It sounds like money goes to organizations through funding to help us and our children, but things really don’t seem to get better.
  • More doctors were trained on handling developmental disabilities.
  • Make it easier to be a provider in WV. Our dentist can’t find an anethetist who can afford insurance to come to his office. Provide incentives. They don’t receive enough from medicaid and medicare anyhow, and now we are taking up more of their time.
  • Providing medical practices and medical students with specific training to caring for patients with developmental disabilities. I think a lot of the ignorance comes from lack of knowledge or awareness, or feeling inadequate to care for a patient with DD due to misperceptions. Improving awareness will improve acceptance.
  • I would LOVE to see early intervention expanded to age 4. The current system is set up to provide services until age 3 when a child with a disability can seek services within the school system. But many children with disabilities aren’t ready to enter school at 3 and have at least a year gap in services like speech, occupational therapy.

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