Moving Towards Independence: Education and Health Care
Author: Erica Freeman
Independence in adulthood is the ultimate goal for all children, however this is especially true for children with disabilities and/or chronic illness. Independence requires collaboration amongst the child, the parents/guardians, the school system, and all of the child’s care providers. The collaboration includes the child’s living situation at home, their academics and personal life at school, the medical care and/or therapy that the child receives, and the child’s own abilities and capabilities. The collaboration of all of these providers is essential to fostering eventual independence. A child with disabilities and/or chronic illness also needs to be able to make decisions, self-manage, and be able to accept the responsibility of caring for themselves. The skills needed to be independent in adulthood are of the utmost importance as a child transitions to from adolescence because without these skills, the child will always be dependent on others for daily care, medical care, their cost of living, and their ability to have and maintain personal relationships and connections. This fact sheet is to help highlight the importance of different skill areas and provide examples and resources for children and the caregivers of children with disabilities and/or chronic illness.
Question 1: What can be done at home to foster independence?
Answer: Parents can foster independence by prioritizing and reinforcing its value. Parents should include a child on decision making and discussions about their future independence, vocation, guardianship, reproduction, life expectancy, and any other special circumstances that might arise from having a disability. As the transfer of services goes from family/youth doctor to adult medical subspecialists, the ability to make independent medical decisions has to be kept in mind. At this point the child should be as well-versed in their own medical needs as possible and have had ample inclusion on their own medical decisions thus far. Independent living needs have to be taken into account including any at home medical care that might be necessary. Whether or not the child will be able to perform all of the at home medical requirements also needs to be taken into consideration.
Question 2: At what age should planning begin?
Answer: Assessment of needs should begin around the age of 12. However, it is never too early to talk to a child about their circumstances, their expectations, and their future transitions. Actual transition planning should begin around age 14, and transition planning should be well-established by ages 16-17. At 18, and adult model of care should be initiated for most youth, even if there is going to be no transfer of care.
Question 3: What can be done at school to foster independence?
Answer: The school setting can foster independence by allowing students with disabilities to complete their work with the minimum accommodations necessary. The school can also allow the student to keep track of their own medications and treatments with guidance from the school nurse if the student is able to do so.
Question 4: What can be done in the medical setting to foster independence?
Answer: To foster independence in the medical setting is simple in theory and difficult in practice. I think that, at an appropriate age, having the medical professionals speak directly to the child (with the parent present), and having the child ask questions and receive the answer could go a long way to fostering independence. The child should feel in control of the situation and their treatment as much as possible and as they get older and hopefully more capable, more control should be transferred to the child.
Question 5: What are some the important skills that a child with disabilities must have in order to ensure a successful transition to independence?
Answer: Self-management and independent decision-making about healthcare needs are both very important. If a child with disabilities is not able to care for and keep up with their own needs, than a successful transition is impossible. The ability to make decisions independently about healthcare is an obvious one, however even some children without disabilities can struggle with this. Children with disabilities have the added enormous responsibility of being their own advocate and keeping up with the information, care, and treatments that come along with having a disability or chronic illness.
A parent of a child (K.S. age 11) with Autism Spectrum Disorder recently came in, upset that her child seemed to take no interest in his own care. We sat down and discussed the options she had and decided to help K.S. become more involved with his own care. We implemented this into his private therapy, providing a visual schedule and reinforcement for following the schedule. K.S. also has ADHD and OCD and needs to take medications twice a day for both. We also put K.S.’s medical schedule (doctor’s appointments, etc.) and his therapy schedule. K.S. is now taking all medications independently and keeping track of all his own therapy sessions and doctor’s appointments. This seems to have also had an effect on his schoolwork as K.S. has begun to independently keep his own schedule of classes and homework due dates.
This resource breaks down fostering independence in children with special needs into 5 easy to understand steps for the parent.
This resource goes over the importance of keeping your child involved in their own medical care. It provides “Dos” and “Don’ts” for the parent in order to foster independence in their child. This site also provides further resource articles with expert advice on raising independent children with disabilities.
Transitions Clinical Report Authoring Group. (2011). Clinical Report—Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home. Pediatrics, 128, 182-200. DOI:10.1542/peds.2011-0969
Grant, C. & Pan, J. (2011). A comparison of five transition programmes for youth with chronic illness in Canada. Child: Care, Health and Development. 37, 815-820. DOI: DOI: 10.1111/j.1365-2214.2011.01322.x
Crowley, R., Wolfe, I., Lock, K., & Mckee, M. (2011). Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 96, 548-553. DOI:10.1136/adc.2010.202473