Planning for the Future When You Have a Child with Angelman Syndrome

Planning for the Future When You Have a Child with Angelman Syndrome

Being the parent of someone with a chronic disease, such as Angelman syndrome, can be challenging and exhausting. Many parents and caregivers also worry about what will happen if they are unable to care for their child due to age, an accident, or infirmity.

If you take care of a child with Angelman syndrome, here are a few tips to help you get started in planning for the future.

Contact local agencies

Local agencies or programs, 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 in the future. You may become ill or disabled yourself, or the child could outlive you.

Don’t assume that siblings or other relatives will be able to care for the child. Have honest conversations about how much care and support each family member is willing and able to give. Their future situation may be different from what you assume.

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 the child property or a trust fund may make them ineligible for the health benefits they will need. Meet with a financial adviser to discuss the best way to plan financially for the child’s future. If your child needs a legal guardian, identify who that will be.

Start searching for a residential facility

If you’re thinking about putting your child in a residential facility in the future, start searching for one now because many of them have long waiting lists. You will also want to have enough time to consider which facility will be best in terms of location and type of care offered.

Foster independence in your child

Try to teach your child as many skills as possible and focus on small goals. Can they dress without assistance? Can they brush their teeth? Can they feed themselves or cook simple meals? Try to help them learn as many skills as possible. Think about enrolling him or her in an independent living facility or daycare program.

Help your child to socialize

Encourage your child to socialize with others because social interaction can have a positive impact on their well-being. They may then be more comfortable accepting help from others. It is important for them to accept help from people other than their primary caregiver.

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 them? What will they enjoy? Considering their desires, and not only their needs, will make life more enjoyable for them.

 

Last updated: Jan. 6, 2020

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Angelman Syndrome 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. 

Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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