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Ways To Improve Healthcare Outcomes for People With IDDs

Access to healthcare is challenging for Americans of many demographics, perhaps for none more than people with intellectual or developmental disabilities (IDDs) and their families. They must not only navigate complex government healthcare assistance programs, but also interactions with medical staff who are widely untrained in IDD-related care. Many providers aren’t equipped to communicate well with people who have IDDs or anticipate their particular health risks and complications, which can lead to dangerously inadequate medical care.

This often leaves parents and caregivers to advocate for people with disabilities in healthcare settings. If you’re one of them, keep reading for tips on how to do this effectively.

Tips for Advocating for Your Adult Child With IDDs Regarding Healthcare

Here are some tips for mitigating barriers to healthcare for your adult child who has IDDs.

Be Well Organized

As with so many other aspects of caregiving, keeping track of your child’s health concerns and care is key. Be sure to do the following:

  • Keep a journal of health-related observations. This can relate to behavior, reactions to or side effects of medication, or any general changes in habits or well-being.

  • Keep complete medical records. Until your child turns 18 (and afterward, if you remain their legal guardian), you have the right to obtain copies of their medical records. Carefully organize and store records of all medical visits, procedures, and lab results.

  • Take notes and prepare questions. Take notes of all communications with your child’s medical providers, including any questions you may have before, during, or after appointments. Most of all, don’t be shy about asking them (and noting the answers).

Obtain the Legal Guardianship Status Appropriate for Your Child

If your adult child (aged 18 and up) is unable to advocate for themselves with regard to health and medical decisions, you may need to pursue a special legal guardianship status. This can involve obtaining a plenary guardianship, limited guardianship, or a healthcare power of attorney. This will allow you to make and attend medical appointments for your child and be involved in their care plans.

Identify Useful Healthcare Resources

Remember, you don’t have to do this alone. Arm yourself with resources that can help you navigate healthcare for your child and refer to them regularly. Ask your child’s healthcare providers for additional resources as needed. Be sure to obtain the billing department contact information for each provider’s office in case you

have any billing disputes.

Get Resources to Navigate Life Better With Progressive Lifestyles

Progressive Lifestyles, Inc. is dedicated to providing innovative support services for people with disabilities. Our mission is to provide supportive and caring residential opportunities for individuals with intellectual and developmental disabilities throughout Oakland County, Michigan. Browse our blog for additional resources to help you and your child live your best and healthiest lives.

A primary focus of our organization is to interact with the individuals we support through the “Culture of Gentleness” model. We seek to create a positive environment to help them feel safe and valued while maximizing praise, limiting demands, maintaining consistent structure, and reducing stress during transitions.



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