Is the Right to Access to the Services and Supports Ensured for the Deaf and Hard-of-Hearing Children? An Ethnographic Study Based on the Experience of Hearing Parents
Abstract
:1. Introduction
1.1. The Access to Services and Supports of Deaf and Hard-of-Hearing Children
1.2. Aim of the Study
2. Materials and Methods
2.1. Aim and Context of the Study
2.2. Participants
2.3. Instruments
2.4. Procedure
2.5. Data Analysis
3. Results
3.1. Access to the Available Services
“We did not live in “the main city”, we lived in the north, 18 hours by car from “the main city”. It is an isolated region. So, services are available, but further. (…) For the audiologist, it was at 45 min by car, it was ok, for the speech therapist it was ok too, she could move to our city and that was great. For the otorhinolaryngologist, in theory, there was one 45 min away, but staff is continuously changing, they did not have time to hire nobody else, nobody wanted to go to work there, so we left. This was a real struggle, it happened often that it was necessary to go down to “the main city” by plane to be told that it has too many otitis and then we were told “I cannot see anything, put some drops and come back to see me”. We had both taken vacation for this and paid for the plane tickets.(Participant 12-514-1)
“When your children start school, there is almost nothing available because the waiting lists are so long that your child may be seen once a year if you are lucky, whereas before he was 5 years old or before going to school, there was an appointment almost every week at each service. That makes a big “WOW!” when you arrive at school. And you ask... How is that possible that he cannot do physiotherapy anymore? How is that that he can no longer do occupational therapy anymore? How can he not do speech therapy anymore? (...) It makes you also angry because you see the progress your child has made until now and then all of a sudden, boom! Everything stops and this is something that needs to be fixed in my opinion.”(Participant 11-201a-2)
3.2. Access to the Desired Services
“There are not enough audiologists and resources for the current number of deaf children. The government sometimes thinks that there are only a handful of deaf children and they do not allocate the resources needed for current demand.”(Participant 11-701-1)
“I feel frustrated and helpless. This is the limit of anger. Just not having the choice, I have to select a surgeon for my daughter who knows only her ears, it’s frustrating. (...) He never spoke to her, just for the cochlear implant when my daughter asked him ‘Will I hear the same if it does not work?’ There he was taken aback…”(Participant 12-304-1)
3.3. Parents’ Struggles to Access Services
“At the school where I sent my son, I really saw it was all about the money. A disabled child means a more funding and more funding means they have more money in their pockets. They do not necessarily have to give all the resources to the parent who is entitled, because if the parents do not know about their rights, why would we give it to them? Seriously, I think there are a lot of schools like that. (...) I know that we have the right to a support teacher. At one point, I talked to the teacher and he said ‘yes, yes, it will be done’. OK. I asked my son ‘Who is your support teacher?’, ‘My what?’, ‘The person who comes into the class’. He does not have anyone coming into the classroom.”(Participant 12-302-1)
“She has the right to a phone. With the list of all that there is she only has the right to a phone and headphones for TV. And I said well I want them. You tell me that I have the right I want them. But you know I had to ask for the right to receive them because they were not offered to me.”(Participant 12-110b-3)
4. Discussion
4.1. Bringing and Adapting the Services to the Rural Settings
4.2. Reducing Wait Times for Assessment and Treatment
4.3. Moving Towards Integrated and Person-Centered Services
4.4. Parents as Advocates of Their Children’s Rights
4.5. Limitations and Avenues for Future Research
Author Contributions
Funding
Acknowledgments
Conflicts of Interest
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Puyaltó, C.; Gaucher, C.; Beaton, A.M. Is the Right to Access to the Services and Supports Ensured for the Deaf and Hard-of-Hearing Children? An Ethnographic Study Based on the Experience of Hearing Parents. Societies 2018, 8, 53. https://doi.org/10.3390/soc8030053
Puyaltó C, Gaucher C, Beaton AM. Is the Right to Access to the Services and Supports Ensured for the Deaf and Hard-of-Hearing Children? An Ethnographic Study Based on the Experience of Hearing Parents. Societies. 2018; 8(3):53. https://doi.org/10.3390/soc8030053
Chicago/Turabian StylePuyaltó, Carolina, Charles Gaucher, and Ann M. Beaton. 2018. "Is the Right to Access to the Services and Supports Ensured for the Deaf and Hard-of-Hearing Children? An Ethnographic Study Based on the Experience of Hearing Parents" Societies 8, no. 3: 53. https://doi.org/10.3390/soc8030053