While advocating for your adult child with disabilities in the healthcare system is incredibly important, it can be challenging to navigate. In this article, we’ll share information about advocating for adolescent and adult children with an intellectual or developmental disability.’
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As a mother of a teenage daughter with autism, I understand the kind of challenges others like her face in the healthcare system. Below, we’ll discuss why advocacy is important, what an advocate can help with, and how you can go about helping your child in the healthcare system.
You might also be interested in reading: Healthy Eating for Autistic Adults: Tips for Helping Your Adult Child Eat Healthy
Why do adults with disabilities need a healthcare advocate?
Disabled people need to have an advocate to help them navigate the healthcare system because there are so many barriers, and high-quality medical care is especially important for adults with disabilities.
Studies, including this one of autistic adults and healthcare, show that people with disabilities are not only more susceptible to health issues than those without disabilities, but disabled individuals are also often less likely to report medical concerns.
In fact, if we’re looking at autism alone, many people on the autism spectrum disorder may have another diagnosis, such as high blood pressure, a sleep disorder, or depression. This applies to people with other developmental or intellectual disabilities too. This isn’t to say they can’t live a long, happy, and healthy life if someone advocates for them to get suitable healthcare.
Many medical care providers are also unprepared to treat people with disabilities. They don’t always value the concerns these patients may have, and there’s also a lack of knowledge of the fact that this population is at risk for additional health-related conditions. However, an advocate can help with communication and ensure the individual is working with suitable providers.
Adults with disabilities may also need an advocate to help with medical benefits and bills, which we’ll go more into below.
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Advocating for Your Adult Child With Disabilities
If you’re a caregiver for an adolescent or adult with disabilities, you might already understand that the healthcare system doesn’t necessarily cater to them. The more you know about how to advocate, the better you can help ensure they’re taken care of.
Here are a few important things to know about advocating for those with disabilities –
What Areas an Advocate Can Help With
Because the healthcare system can be so complicated as it is, and those with disabilities face additional obstacles, there are many areas an advocate can help with regarding healthcare, including:
- Ensuring the individual has appropriate benefits (learn more about that here)
- Supporting the individual to get proper medical services
- Assisting with doctor visits: making sure your child regularly visits a doctor, attending appointments with them to be a part of communication, and ensuring that all healthcare concerns and needs are being met
- Helping with medical bills to review them, ensure there aren’t any mistakes, address possible billing errors, and make payments accordingly
- Speaking up when you feel like something is off: for example, you might feel like the individual needs medical attention, but they don’t, or a healthcare provider isn’t properly addressing concerns
Obtaining Rights to Help With Healthcare Decisions
As you may know, if your child with disabilities is 18 years or older, you may not be able to help with specific or any areas of their medical care. However, there are ways to obtain the right and responsibility to be involved with an individual’s personal matters by legally becoming their power of attorney, guardian, or conservator.
Being a healthcare power of attorney allows you to make decisions related to healthcare if the individual isn’t able to. It also allows you to make appointments and be involved with doctor’s visits. Power of attorney is the easiest option, but it’s also easy to undo. The individual must agree to their appointed power of attorney and can withdraw the status.
A financial power of attorney, guardianship, and conservatorship can also offer you rights related to an individual’s healthcare and financial needs. Unlike power of attorney, where it’s appointed by the disabled individual, the court must assign guardianship or conservatorship.
Related article: Power of Attorney vs Guardianship vs Conservatorship for Your Adult Child
Healthcare Advocacy is a Big Responsibility
It’s crucial to understand just how important healthcare advocacy is. As we mentioned above, individuals with disabilities are often at a disadvantage in the healthcare system. That said, the person’s advocate needs to be aware of and ready for the responsibility.
A child’s parent doesn’t always have to be their healthcare advocate. It can be any trustworthy loved one who’s able and willing to take on the responsibility.
If there’s a healthcare issue regarding your adult child that you’re currently facing, a healthcare attorney can provide you with assistance.
Advocating for Your Adult Child in the Healthcare System: Final Thoughts
The healthcare system can be complicated, and we hope this article has helped you better understand how to advocate for your adult child.
If you’re interested in further support for your adult child, check out NFlyte, a platform designed to help adults with autism and other developmental disabilities live independently.
