Caring for a Child with Disabilities

Caring for a Child with Disabilities

How do the relationship roles change when caring for a disabled child?

Caring for a child with a disability can be one of the most heart wrenching experiences a parent can go through, but at the same time can also be very rewarding. It is important to never undermine the stress faced on a daily basis by the parent caregiver of a disabled child. Every day tasks such as feeding, grooming, toileting and bedtime routines can be extremely challenging, especially if the child requires complex care.

In some cases, the child may suffer from a lifelong disability which involves ongoing assistance with activities of daily living. This type of situation prohibits the child’s ability to grow into an independent person that takes care of their own needs. Therefore, a continuous caregiver is always needed and when the parent is the caregiver, this will dramatically change not only their life but the lives of the entire family as well. Especially when other children live in the home, they may feel like their needs are not being met or not enough time and attention is spent with them. Likewise the husband and wife relationship may suffer as one spouse spends a lot of time with the disabled child and not as much time in the relationship. Many people in this situation will no longer be able to work, as caring for the child may be a full-time responsibility.

How is the self-esteem of a child with a disability affected?

Depending on the cognitive awareness of the child that suffers from a disability, self-esteem may or may not be affected. For a child who was once healthy and free of any disabling conditions who experienced a change that left them disabled, the child’s self-esteem may suffer dramatically. To become disabled leaves the person in a state of grief, grieving for the loss of abilities or functions that one previously had.

Portrait Of Beautiful Young Girl SmilingFor the child who is not aware of their disability or does not understand that they are different from others, there may not be any issues with self-esteem. On the other hand, the child with a mild disability, such as a learning disability, may have many issues with self-esteem due to the awareness of their difficulties and the lower expectations placed on their performance. Every individual case is different, but it is important to bear in mind that all disabled children can suffer from issues with self-esteem, so it is important to be aware of this and promote the child’s positive attributes and praise their accomplishments to promote a healthy attitude.

What type of support is available for caregivers and children with disabilities?

Responsibilities for caring for a disabled child can be overwhelming, especially when caring for a child with complex needs. Parents caring for children with disabilities can contact many different resources for support. Online support groups are one way parents going through similar issues can reach out and communicate, providing support and reassurance for one another in the form of chat groups, forums and more. The internet can be a powerful tool to research other benefits provided by the state or in your local community, designed to help those families caring for children with disabilities.

Local communities also provide opportunities for parents to reach out and communicate with others in the form of support groups. Also available are respite services for those who provide routine care and need to take a break from caregiving for a certain amount of time for any reason.

Another service provided by the community comes in the form of a school or daycare program for the child with a disability to learn and engage with other children. Furthermore, many children with disabilities may require services such as speech, physical or occupational therapy. All of these therapy services can be set up and are provided within the community, skilled nursing facility, or home setting.

Is at-home patient care appropriate?

Businessman Holding His Disabled Son On GrassMany children that suffer from a disability are cared for at home by another family member, oftentimes a parent and sometimes all the way through adulthood. Some children require very complex care and at-home care may be too difficult, especially if both parents have to work and there is no one available to provide continuous care for the child.

What types of assistive devices are available for in the home?

Depending on the needs of the disabled child, there are many available adaptive devices that are designed to make activities and care easier. Many children that suffer from a disability may require wheelchairs, helmets, floor mats, braces, hospital beds, adaptive rails, shower chairs and so much more depending on the needs of the child.

How do I know what level of care is appropriate for my child?

As the caregiver for a child with a disability, you will know best how much assistance the child requires. Sometimes the care can be so complex that home management may become more difficult, maybe even impossible. Also, as the child gets older or the needs change according to the progression of a disease or disability, the care requirements may become greater and possibly less manageable for the home setting. Speak with the child’s physician if you have any concerns regarding the safety of home care for your child or the level of care necessary.

Does my child need full-time nursing care?

As hard as the decision may be, there may come a time where a child with a disability requires 24-hour nursing care. When the medical needs are too complex to be provided by only a family member, or if there are no family members available to provide the care, full-time nursing care may be the most appropriate option. It is possible to provide 24-hour per day skilled nursing care in the home setting with the assistance of home health nurses and other professionals. Unfortunately for many, full-time in-home care is not possible due to the high costs.

Can my child maintain independence in assisted living?

Assisted living facilities are set up with apartment style living quarters and provide a lot of independence and privacy. This option is most appropriate for children who are unable to be safely cared for in the home, but don’t require around the clock nursing care. Many services can be provided to a child in assisted living from basic housekeeping, to assistance with activities of daily living.

Will insurance/Medicare pay for skilled nursing facility?

Depending on the situation, there will likely be available benefits for your child with a disability to live in a skilled nursing facility. In fact, Medicaid offers programs that guarantee a child or a person living with a disability is able to obtain long-term nursing home care.

How do I know which nursing facility is right for my child?

Each and every skilled nursing facility is different and the level of care and types of amenities provided will vary from place to place. It is important to take a tour of more than just one facility. Try to visit at least three if possible, so you can find one that is the most appropriate facility that is ready to meet the needs of your child.

How to talk to my child about going to a skilled nursing facility?

It is vital to maintain honesty and openness with your child regarding transitioning into a skilled nursing facility. Cognitive functioning and awareness will ultimately determine how much you will communicate with them about the decision, but keep them as involved as their condition will allow. Be sure to explain the benefits and how the transition will help them achieve their optimal level of functioning and all the fun activities and events that will be provided that are not available for home care.

Contributing Authors

Kelli Wilson, RN
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James Conte, RN, BS Nursing, BS Pharmacology
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    Miranda Booher, RN, ACLS Certified, BLS Certified, Tx Certified
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      Carolyn Falconer-Horne, Ph.D. Candidate
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      Last Updated October 14, 2014