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: Travel and Accessibility, with 73 respondents completing survey #3 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?
What is your race or ethnicity?
How far do you currently travel to access primary health care for your child?
How far do you currently travel to access mental health care for your child?
How far do you currently travel to access oral health care for your child?
How far do you currently travel to access specialty health care for your child?
How far have you had to travel to access health care for your child?
If you’ve ever used public transportation — including taxis, Uber services, etc.–to take your child to a medical appointment, have you ever experienced any of these challenges?
If you have lived outside of WV, how does this state compare to other areas you have lived?
Have you ever moved — in-state or out-of-state– for better access to health care services for your children with developmental disabilities?
Is it difficult for you to travel to visit your children’s doctors or medical providers? If so, please explain.
- Yes, at age where she doesn’t like to go doctor appointments anymore.
- Yes, particularly the long drives for specialists. What would be an hour time commitment for a local appointment can become a five-to-seven-hour excursion, which has to be worked around school and work schedules. In addition, by the time we arrive, my child can be not in the best frame of mind which can make visits harder. Some providers are very understanding and others are not.
- We have to navigate care for the child that is not going to the doctor. We both work full time. While we have flexible jobs, neither of us have family or support systems in our community to watch our children when we have to take one to the doctor.
- Well now it is getting kind of crazy with gas prices and lack of PTO at work. I typically have to take a day to go to Dr with my daughter.
- Yes, it takes planning and preparing as it is usually an all day event for just 1 appointment
- Gas is very expensive. He has so many doctors in many different locations so we are running around everywhere.
- Difficulties in transportation
- It’s a long way and a little inconvenient
- The medical conditions here are very good
- Of course, it’s very inconvenient
- Yeah, it’s too far.
- In an emergency I feel helpless.
- No, the medical providers for my son are nearby. However, I do wish that there were medical providers with experience working with adults with autism. I would be willing to travel further to see them, if that were a possibility.
- Yes, she gets restless in the car. And with gas prices going up it is very difficult
- Long car rides can be difficult and expensive.
- not difficult
- It is difficult because am living in a rural area and means of transportation is difficult to access also
- Not at this time but as she gets bigger and I get older it will be harder to lift her in and out of the car
- Sometimes depending on who we’re seeing. Sometimes I have to go to Huntington WV for her immunologist which is 3.5 hours away.
- My 40 year old son uses a wheelchair and is unable to assist with transfers, I have to lift him out of his chair and into and out of the car, I have a manual wheelchair carrier for his chair. If it is too cold out I cannot transport him because the chair will be too cold to sit in, he has a hard time regulating his body temperature and would require a heated blanket to get his body temperature back up, I also cannot put him in a hot chair because it would burn him
- I have to take the entire day off for a visit to specialty care. It is 130 miles round trip
- Yes, because it requires me to take an entire day or two off work rather than a few hours. Not to mention the expense of it.
- Yes we have to commute over 3 hours most of the time for specialists appointments
- There are no public facilities that provide changing tables for incontinent adults.
- Yes, we had to travel to Morgantown from Princeton for our Son’s Autism evaluation. We have to do this every six months around 200 miles one way. We are still looking for ABA therapy close to home or else we won’t be able to provide this for him.
- It is difficult because we must plan for overnight trips which take time away from work and can be expensive.
- We live in the city and one of the few cities in West Virginia that has access to some of what our son needs.
- Gas prices and appointment times with work schedule.
- I have to take a whole day off of work, which costs money. Plus the gas to get there is expensive.
- Yes I often have a hard time to get appointments
- Husband is 73, I work full-time. We have to go to WVU in Morgantown.
- My daughter sees about eight specialists we try to coordinate visits as frequently as possible but it is challenging and sometimes result in multiple visits and a 165-mile drive in one direction
- It can be, as we often travel out of state and have to make sure we have enough supplies for him.
- Sometimes when weather is bad or when my son is having breakdowns
- Traveling 176 miles to receive care and then 176 miles back home is difficult. Parents miss work. Children miss school. It takes an entire day to drive 176 miles, have an appointment. And then drive back home. It’s too expensive to stay overnight. If we stay overnight, more work is missed. More school is missed. The cost of the overall trip goes way up. I can’t afford it. We do day trips which are emotionally taxing to spend so much time in the car, especially when your child is not feeling their best
What is the biggest transportation-related issue you’ve experienced when accessing health care for your child with developmental disabilities?
- Long travel. Fatigue. If testing required then stay extra hours
- Mostly distance. It just takes time to get to a place with the services available. I would imagine tolls would also be an issue for many people.
- His autism center only has a few designated spots for visitors, and there are a few times you have to circle the parking lot looking for a space.
- Having the money for gas to and from appointments
- Traveling alone
- It’s a long drive. The kid’s not too happy
- It’s far from my house
- The car is not convenient
- The traffic is heavy and not very convenient, which delays the time
- I have not faced too many transportation issues. My son’s behavioral issues during transportation have, at times, been a challenge. But, the transportation itself (driving my car to his appointments) has been okay. I guess the toughest time was when my old Volvo started to have issues. I was concerned at that point because accessing public transportation from my home is not possible, and I do not think my son would handle public transportation at all.
- Attitude disorder. People with disabilities often report experiencing prejudice
- Some of her specialists are 3-5 hours away.
- It’s difficult to access the back seat while traveling long distances. I would have to have a family member go with me or a friend which isn’t always possible because my child would gag herself and I didn’t know if she was gagging or choking unless I pulled over or turned around which is dangerous while driving.
- There are no obstructionist or non-existent seats on public transport
- “Underdeveloped transportation,”
- Inconvenient transportation
- No transportation
- Her traveling safe in a car
- My transmission and clutch keep going out in my car.
- I am getting older as is he. I have significant damage to my lower back which makes transferring him in and out of the car very difficult. We have a lower-quality wheelchair carrier that is heavy and awkward and is starting to show a lot of rust after a couple years of being mounted on my Kia Sorento, I am not able to afford a wheelchair accessible van that is reliable. Prior to getting the wheelchair carrier I was picking up and loading the custom manual chair and putting it into the back of the Kia by myself which has contributed to my back problems. The doctors are recommending an ablation.
- the mileage for round trip and the weather. When traveling out of state you need to keep weather in both states in mind. You can be caught in a winter storm and not be able to return home that day.
- expense and time
- Public transportation is either unavailable for wheelchair or needs to be scheduled far in advance. Then they don’t always show up on time or at all.
- We can’t drive an hour each way to take my son to ABA therapy. One of us would have to quit our job. If there was one closer we could make it work.
- Thankfully we do not incur any travel related issues at this time.
- I don’t even try public transportation. It’s not worth the hassle with his wheelchair.
- Lack of accessibility
- Everything is just too far away.
- Travel in winter months has been a particular concern with weather variations from home to several counties away. We’ve encountered serious storms as well as significant ice and snow on occasions to get to necessary appointments
- Gas money, and paying for parking
- Travel a far distance to get to my child’s dr and the apt was canceled. When they tried to get hold of me on my cell there was no phone service.
If you have lived in another state or state, please share details about the state and services that were or weren’t available for your child.
- Not at this time but as she gets bigger and I get older it will be harder to lift her in and out of the car
- Sometimes depending on who we’re seeing. Sometimes I have to go to Huntington WV for her immunologist which is 3.5 hours away.
- My 40 year old son uses a wheelchair and is unable to assist with transfers, I have to lift him out of his chair and into and out of the car, I have a manual wheelchair carrier for his chair. If it is too cold out I can not transport him because the chair will be too cold to sit in, he has a hard time regulating his body temperature and would require a heated blanket to get his body temperature back up, I also can not put him in a hot chair because it would burn him
- It’s very difficult and stressful… I couldn’t bear the pain
- I have to take the entire day off for a visit to specialty care. It is 130 miles round trip
- Yes, because it requires me to take an entire day or two off work rather than a few hours. Not to mention the expense of it.
- Yes we have to commute over 3 hours most of the time for specialists appointments
- There are no public facilities that provide changing tables for incontinent adults.
- Yes, we had to travel to Morgantown from Princeton for our Son’s Autism evaluation. We have to do this every six months around 200 miles one way. We are still looking for ABA therapy close to home or else we won’t be able to provide this for him.
- It is difficult because we must plan for overnight trips which take time away from work and can be expensive.
- We live in the city and one of the few cities in West Virginia that has access to some of what our son needs.
- Gas prices and appointment times with work schedule.
- I have to take a whole day off of work, which costs money. Plus the gas to get there is expensive.
- Yes I often have a hard time to get appointments
- Husband is 73, I work full-time. We have to go to WVU in Morgantown.
- My daughter sees about eight specialists we try to coordinate visits as frequently as possible but it is challenging and sometimes result in multiple visits and a 165 mile drive in one direction
- It can be, as we often travel out of state and have to make sure we have enough supplies for him.
- So times when weather is bad or when my son is having breakdowns
- Traveling 176 miles to receive care and then 176 miles back home is difficult. Parents miss work. Children miss school. It takes an entire day to drive 176 miles, have an appointment. And then drive back home. It’s too expensive to stay over night. If we stay over night, more work is missed. More school is missed. The cost of the overall trip goes way up. I can’t afford it. We do day trips which are emotionally taxing to spend so much time in the car, especially when your child is not feeling their best.
Do you have any additional information you’d like to share about your experiences in traveling or accessing transportation to visit health care providers? Is transportation a challenge for you?
- Asking for time off for appointment has been a struggle in past
- It is not ideal, but we make it work.
- We know we are fortunate to live in Huntington, but it is job dependent. I’m nervous about a move to another church (I’m a pastor) where resources and care is not readily available. A move outside of a few cities in the state would force us to consider leaving WV.
- Most of the time Modivcare does not reimburse for mileage and becomes a hassle
- I moved closer to Charleston to be close to his doctors
- I have good transportation and medical treatment here.
- It’s inconvenient to take public transport
- Not yet. It’s a very big challenge
- The bus is a waste of time when you have only one car at home
- Transportation is a big problem
- Persons with disabilities face many obstacles in using transport to access essential items such as fresh food and services such as medical care that are essential for the maintenance of health
- It can become very costly to access providers that are far away.
- No problem. Book a taxi a day in advance and make sure of the next day’s itinerary.
- Transportation is a very big challenge and finance also
- It can be a challenge based on distance.
- I not only deal with the transportation issues on a personal level, but I also deal with it professionally and as a volunteer advocate. People are ending up the Emergency Department for something that could have been addressed in the doctor’s office if they could have had transportation. The local rescue squads are refusing to transport unless it is determined to be an emergency situation and they will not transport to the location of the person’s primary medical team. They will only transport to the closest facility. If it is deemed necessary by them, they will then transport to the facility with the person’s primary medical team. This can waste valuable time with some of our people, and it also doubles the cost of that incident, two ER visits, two ambulance rides, lab work, tests, etc.
- Yes especially in the winter months when the weather can change and cause you to reschedule on short notice.
- I wish there were more specialty providers across the state instead of having to travel to Morgantown all the time
- If we did not live in Huntington or Morgantown with my job, we would seriously consider relocating out of West Virginia due to the severe lack of therapy options for my son.
- It’s a huge challenge, mostly because I’m an only parent to 4 children and I have to spend a whole day off work/driving whenever he has an appt. And the doctors never want to all see him on the same day so it’s a lot of back and forth.
- I will travel as far as I need to get my son help. The problem is yes cost, but more is good mental health case in the state! There are a lot of programs but the help does not get to the people that need it.
Do you have a recommendation as to how to better address transportation issues to ensure children with developmental disabilities have access to health care?
- Lot people can’t get to appointments and therapy. Discount bus or Uber. Or type Uber program that paid by Medicaid or insurance
- Honestly, it would be fantastic if we could have additional specialists in different areas of the state. I understand the challenges with that, but it would be great. I understand there is work on a high speed train going through the state. It would be terrific if families with children with special needs could have a medical pass that would allow them access, especially if it had stops in some of the major cities in West Virginia. I realize that would be years out, but is something that would be nice.
- We need more access to facilities across the state. This would help to limit the amount of time someone is traveling.
- Make mileage reimbursement easier
- I hope you can go to places with inconvenient transportation to treat their children.
- There is a fixed public transport to the designated hospital every day
- I don’t think there’s any problem
- Transportation is the primary challenge, if we can open some small hospitals
- Provide specialized vehicle service
- Better transportation would solve a lot.
- I do not have any specific recommendations. It probably depends on the community what options are viable. It would be helpful to provide parents/caregivers with information about the options in their area.
- I recommend that those involved in the pandemic response work together in a conscious effort to address the barriers that people with disabilities face during the pandemic in accessing the transport, communication and assistance they need
- Provide more transportation to those who need it
- Pre-appointment stipend for travel expenses, volunteer aides for long travel, addressing ongoing safety issues for older children while traveling long distances for care.
- The government took the lead in establishing a support association for children with intellectual disabilities
- Improve medical level
- Build more medical places and improve the convenience of transportation
- Transportation is provided free of charge
- I think Hospitals should have their own Uber that patients can order to come and carry them to the health care center and also at a cheaper rate which the parents can afford
- Make car seats better for older children so they are safe
- Only to plan and schedule ahead of time. Maybe have someone specifically at the place you need to go to assist you in getting there.
- I have lots of recommendations, however, the biggest obstacle is, of course, money and personnel, money to purchase enough accessible vehicles and hire enough people, and also competitive wages to retain people that are hired and trained. In the world of developmental disabilities both are sorely lacking……
- When you have to travel out of state there is no transportation available beyond 30 miles beyond state line.
- There should be frequent, accessible bathrooms with appropriate changing tables for adults.
- Maybe a outreach center to offer rides to families who need it.
- Designated parking would be a big help.
- Not in any cost effective way here in WV.
- Provide parent transportation to childrens national easier, to where they don’t have to struggle
- Mobile heath care buses. Bring all kinds of health care to areas! Vans can be made for mental health and dr visits.
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