Care for the Long Road Ahead

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Having a child with a disability is a special experience that allows a parent to understand love in ways others could never imagine. But it also brings about issues that parents never want to consider, the most concerning of which is the fear that the child may not be able to care for themselves as an adult. Thankfully, there are actions that can be taken now to ensure the child’s care today and into perpetuity.

 

Financial matters

 

The question of how to pay for current and future care is a big one that must be answered as early in the child’s life as possible. While disabled children have many of the same needs as their peers, there will be many other expenses along the way. These include social care, additional healthcare costs, and home modification expenses. Additionally, parents of disabled children will need to begin preparing for their child’s financial future as an adult. Questions that must be asked and answered include:

 

  • Who will pay for the child’s care once the parents are unable to?

  • Where will the child live?

  • Will the child be capable of providing for their own care in any capacity?

 

Children under the age of 16 may be eligible for a Disability Living Allowance. Personal Independence Payments are a potential supplement for adults aged 16 to 64. These are not, however, full incomes and cannot provide for all living expenses.

 

Home modifications

 

Depending on the child’s disability, parents may also incur extreme expenses in the form of home and lifestyle modifications to adapt. These may include widened doorways for wheelchair access and stair lifts to help the parents maneuver the child throughout the home. These costs add up quickly. One of the most common and often necessary home adaptations include the installation of a disability ramp, which cost an average of $1753 USD (£1255 GPB). The Disabled Living Foundation notes that other disability modifications are aimed at bathroom safety, daily living, and mobility. Home modifications are vital for the child’s daily quality of life. A home with these modifications is also a good investment in their future as well if they are to remain upon the parents’ deaths. In addition to the home, disabled children may require modified vehicles for transportation. A van outfitted with a wheelchair lift and special safety features can easily cost an entire year’s salary.

 

Network of support

 

Perhaps what is most important for parents of disabled children is their support network. This should include not only family and friends but financial advisors, healthcare professionals, therapists and counselors, and support groups and social networks consisting of other families dealing with like circumstances. Kids.org.uk is an excellent resource for helping parents of children from birth to age 25 locate advice and family support, social opportunities, and learning and development services.

 

Legal concerns

 

As a disabled child ages, he or she may be able to make some decisions regarding their care and living situation. When this is not the case, the family must take legal action to make decisions for the child. In the UK, the legal process for this is executed in the form of a Lasting Power of Attorney (LPA). This is a legal arrangement granted by the government that allows an individual guardian to make decisions on the child’s or incapacitated adult’s living, financial, and healthcare arrangements. An LPA is required for all guardians of those over the age of 18.

No one wants to think about their own death or disability. But for parents of children with severe physical or cognitive impairments, it’s a topic that can’t be ignored. Preemptive measures now mean the difference between care and comfort once the parents are unable to provide it, and the grown child having to face the world alone and unprepared.

 

Artice was written by Ashley Taylor of Disabledparents.org

 

 

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