Being the parent of someone with a chronic disease such as aromatic L-amino acid decarboxylase (AADC) deficiency can be exhausting and challenging. Many parents and caregivers also worry about what will happen to their child if they are unable to care for them.
If you have a child with AADC, here are tips to help get you started in planning for the future:
Contact local agencies
Local agencies or services, as well as nationally available disability services, can help you plan for your child’s future.
Acknowledge that you may not be able to care for your child — if you become ill or disabled yourself, or if your child outlives you.
Don’t assume that siblings or other relatives will be able to care for your child. Have honest conversations about how much care and support each family member is willing and able to give. Their future situation may be look different than what you assume. Who will be able to provide for your child’s emotional needs if you no longer can?
Meet with a financial adviser
Many people think that leaving property or money to their disabled child will be sufficient to care for their needs, but this may not be the case. In some U.S. states, leaving your child property or a trust fund may make them ineligible for health benefits that they will need. Meet with a financial adviser to discuss the best way to plan financially for your child’s future. Will your child need a legal guardian, and who will that be?
Start searching for a residential facility
If you’re thinking about putting your child in a residential facility in the future, start searching now for one because many of them have long waiting lists. You will also want to have enough time to consider which facility will best meet your child’s needs.
Foster independence in your child
Try to teach your child as many skills as possible but focus on small goals. Can your child dress themselves? Can they brush their teeth unassisted? Can they feed themselves or cook a simple meal? Try to help your child learn as many skills as possible. Think about enrolling your child in an independent living facility or daycare program.
Help your child to socialize
Help your child to socialize with others because social interaction can have a positive impact on their well-being. They may then also be more comfortable accepting help from others.
Focus on your child’s wants and needs
When planning for your child’s future, think about their wants as well as their needs. What will be stressful for your child? What will they enjoy? Considering their desires, and not only their needs, will make life more enjoyable for them.
Last updated: Oct. 16, 2019
AADC News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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