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.

Here are the results to WV Family Survey: Perceptions, with 102 respondents completing survey #2 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 West Virginia do you live in?
Do you believe that the health care system is responsive and supportive to the health care needs of children with developmental disabilities?
Do you feel valued and supported by the health care system, as a parent or caregiver of a child with a developmental disability?
Are you ever concerned that a physician or medical provider’s negative perception about people with developmental disabilities contributes to a lack in access to care, or the quality of that care? 
Have you ever stopped going to a doctor’s office because of the way the doctor or staff treated you and your child?
Do you think that local doctors have the proper training and medical knowledge to care for your child?
Have medical staff ever misinterpreted your child’s behaviors as potentially dangerous because they weren’t trained to care for those with developmental disabilities?
What is the most challenging or frustrating misconception do you perceive health care professionals have when it comes to your child with developmental disabilities? 
Please share any thoughts or perceptions you’ve had in navigating and utilizing health care services in the state of West Virginia that can help inform how parents and caregivers experience the system.
Do you have a recommendation as to how to better address the misconceptions that health care professionals may have about children with developmental disabilities?
  • More training
  • Their diagnosis isn’t always correct in my opinion
  • case managers that can help with the resources available
  • None i have even spoke to the Governors office
  • A portal that is connected nationwide
  • Train train train.
  • Require more training
  • Training, every health care professional should be required to take a class in disability studies. If they understand more of where the caregivers are coming from it will be easier for them to work towards a common goal for the child. Communication is a huge deal. If a doctor is not willing to take the time to talk to me and explain to me what is going on or they do not take the time to truly listen to me I move on to someone else.
  • Learn from the adults with DD. Listen to their experiences, their recommendations and insights.
  • Inclusive language is important. “Invisible” disability stigma must be abolished and my concerns as a parent are just as valid.
  • More training. Schools expect doctors follow child find so they don’t have too. Dyslexia happens to 1 out 5 kids.
  • Listen to the mothers a little more. I know there are largest out there that try to make things seem worse than they are for whatever reason, but the majority of parents just want help.
  • What I feel most times their hands are tied because they write prescriptions for the equipment that is needed to become independent but due to insurance they’re not available.
  • Possibly offer trainings on how to deal with & treat nonverbal children? Maybe other ways to diagnose instead of just getting “I’m not sure” all the time. Offer more options for seizure control other than adding more pharmaceutical medications.
  • Provide updated info to providers
  • Stop throwing medication at the person before you even find out what’s going on
  • Listen to the parents
  • Listen and trust what the caregivers tell you. We are with them 100% of the time. If we tell you something is wrong listen! Do not try to take a non verbal patient without their parent/caregiver being present! Covid or no Covid!!!!
  • Be your child’s voice, if you do not agree with one doctor get a second opinion with a different doctor, at a different practice.
  • More training
  • Research and listen to parents. We know what’s normal and abnormal for our kids
  • Personally, I don’t. But, I will say that they could learn a lot from Children’s Hospital in Cinn , Ohio. The difference in care between doctors/ hospitals here and the aforementioned facility are great.
  • Be patient, understanding and kind
  • Yes, Policy 2419, the special education policy for the State of WV needs to recognize developmental disabilities do not end at age 5.
  • I think healthcare providers need to give more credence to their parents observations and the parents’ general understanding of how Their children behave on a daily basis to better diagnose issues.
  • Listen to the parents, never tell a parent that their child will never have a normal life because they aren’t with the child all the time like the family.
  • That everyone is the same or if they can talk nothings wrong with them. That hyperactivity or bad behaviors can be from something besides ADHD. That bad behaviors are sometimes just the way they find how to communicate their feelings.
  • Physicians need to keep educating themselves on how to care for kids with disabilities
  • They all think they fit in one box. Every case is different, but they do not see it that way.
  • Education
  • Listen to the parents and trust them more. They know their kid and only want what’s best for their child and his/her needs.
  • Training and experience. Put more value into what parents are telling you about their concerns with their child and be less dismissive.
  • Listen to parents and grand parents.
  • They need better education.
  • Training! We need to train our physicians and teach them how to properly communicate with caregivers and/or parents.
  • Make sure every office is accessible. Not just what the law requires but think about how your office would be to navigate for a family whose child has mobility issues. Do not assume a child who does not have a visible disability does not have a developmental disability and make assumptions about that child or family (this has happened more with office staff than the actual providers)
  • Listen to their parents!
  • I think it would be great to offer courses or continuing education on the topic of health care for children with developmental disabilities. It would also be great for health care professionals to receive a certification in this area and for a website to offer a list of health care providers certified in this area.
  • More training and exposure
  • better education and better communication with the parents/child
  • They should have to spend time with people with disabilities maybe while in school…community service with special Olympics, visit a special needs classroom, go to one of the sheltered workshops…give them time to interact with this population. This is what I did to introduce this population to my practical nursing student I taught.
  • I wish I did. So many of the older doctors who have the patience are retiring and no one is taking the time to familiarize themselves with the whole child and not just the condition at the moment.
  • Doctor’s need additional training on dealing with special needs children. Many refuse to even see a child because of lack of experience.
  • It needs to be mandatory that they all obtain training in various facets of physical and mental disabilities in order to OBTAIN or KEEP their license to practice in the state of WV. And this training must require them to spend a certain amount of hours caring (hands-on) for individuals with various disabilities so they understand what it takes to care for them and see that there are in fact areas where they cannot and will never be like a normal child.
  • They need to spend more time around children with development disabilities . They need to ask questions to the patient if possible or the family if not so they can better understand patient capability
  • EDUCATE AND FAMILARIZE THESE DR’S SO IGNORANCE AND MIS EDUCATION STOP
  • Training
  • Kids disability DON’T go away
  • Provide more specialized care for those with disabilities.
  • Have doctors pay less for education and let them take psychological classes freely.
  • Better training. Kids with autism like things done same way. Be patient it takes while process things and do things
  • More training.
  • Listen to the parents, we are with the child 24/7. We know what we speak.
  • They need better education/ training/ experience. It’s seems at times we know more then they do.
  • Spend time, talk to the parent
  • Have doctors listen to parents
  • Treat everyone as unique individuals, because they are, we’re all unique regardless of any AM developmental disabilities
  • Allow more time for a Lm appointment. Read the IEP/IFSP and know the patient.
  • They are just people. Say hi and remain calm if a problem arises with behavior. Positive behavior training may help.
  • Provide easy, informative training at no cost to all medical facilities and their staff
  • Kids with Adhd needs to be taken seriously. They don’t like to diagnose or do anything until the child is 8. As a parent living everyday life with a child who has Adhd , the parents need to be heard an listen to.
  • Listen to parents and caregivers concerns don’t dismiss them as if they don’t know what they are talking about We live with the children we know more than you think
  • Listen to parents caregiver
  • Decisions need to be a team decision. There needs to be a case mediator/advocate who organizes all of the info from different team members. Birth to three has case managers but I don’t necessarily think it requires a social work degree but good training practice.
  • Not each child is the same. They seem to think there all from the same mold.
  • The schools hospitals need to better train and inform there care providers of how to handle and get on the level of the child to better understand there patient
  • Better training, education, and linkages to resources.
  • Alot more training
  • Knowledge knowledge knowledge
  • More training in special needs
  • PR campaign; grand rounds at Marshall Medical School

The Including All Kids project is funded by a grant from the West Virginia Developmental Disabilities Council. We thank them for their support. 

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