Caregiving for Individuals with Developmental Disabilities

Caring for an individual with an intellectual or developmental disability, also called an IDD, is no easy task. Whether the loved one in your care is a child or adult, there are a lot of responsibilities that fall onto your shoulders. From daily care to appointments and medicine management, here are some tips to help you care for an individual with developmental disabilities. Let’s dive in.

What is an Intellectual or Developmental Disability (IDD)?

An IDD, or intellectual or developmental disability, is a term that encompasses a lot of conditions that can be both severe and/or chronic. Most IDDs last a lifetime and may include symptoms related to speech, mobility, learning, or self-care/grooming. All of these can make independent living a challenge throughout their lifetime.

Caregiving Tips for Individuals with Intellectual or Developmental Disabilities

If you’re a caregiver for an individual with an in intellectual or developmental disability, there are many things you can do to help them. Here are some things to consider through your caregiving journey to make it easier on both you and your loved one.

Learn about the condition

The first thing you should do is exactly what you’re here doing – learning about the condition and expectations for your role as caregiver. Internet searches are a great place to start, but you can find a lot of information other places as well.

Don’t overlook the treasure trove of condition-specific information you can find from:

Support groups
Non-profit organizations (even better if there’s a condition-specific organization)
Facebook groups
Family and friends
And the central medical care team

These are great places to look for recommendations, more up-to-date information, personalized content, and more. This can help you narrow down the best resources for your situation.

Document thoroughly

When caring for someone with a chronic condition, it can be easy to get wrapped up in the day-to-day tasks and lose sight of any progression. However, you likely come across symptoms that are noteworthy from time to time.

If you always expect yourself to remember the details, you may find it slipping your mind. Forgetting to mention these important pieces of information at the next appointment (or escaping your mind entirely). Instead of trying to remember, it’s better to make a written record of these things as they come up. By thoroughly documenting each symptom, you can ensure that your loved one’s medical care team has all the information they need as time goes on.

You should also document any medications, whether over-the-counter or prescription, that your loved one takes on a daily, weekly, or monthly basis. These medications and dosages can be important if your loved one receives a new prescription or experiences symptoms that may be related to any of their existing prescriptions. The medical care team will be able to help determine what’s relevant to the symptoms that are experiencing.

Advocate for your loved one

You know your loved one best, so standing by their side as their advocate is one of the most powerful gifts you can offer them.

This includes things like:

Documenting and presenting any relevant medical history within the family.
Asking any questions you have — whether they are medically related and directed at medical professionals, or related to any daily challenges they may face (like asking about restaurant accessibility, hotel mobility assistance, etc.)
Dig around for resources — including government resources to alleviate physical and financial burdens. For example, the Americans with Disabilities Act or the Family Medical Leave Act.

Don’t forget to take care of yourself

As you probably can already tell, caring for someone with a developmental or intellectual disability can be exceptionally challenging. Not only are you under the pressure of ensuring your loved one is cared for, loved, and safe, but you also have your own personal needs responsibilities to consider as well.

Maybe you have a full-time job, children to care for, other loved ones you’re responsible for, or maybe you lead a community organization or volunteer.

No matter what additional pressures you are under, they all make it harder. Caring for someone with an intellectual or developmental disability alone can cause things like:

Stress
Anxiety
Overwhelm
Burnout
Depression
Your own new or worsening chronic conditions
And a lot more

To provide care, effectively over time, you cannot overlook your own needs. Take time for self-care whenever you can get it using respite care or asking for help from family and friends.

Closing Thoughts: Caregiving for Individuals with Developmental Disabilities

Caring for someone with developmental disabilities isn’t easy, and you don’t have to do it all alone. If you are caring for a loved one with a developmental disability, we invite you to check out our library of free resources for caregivers like you.

The California Caregiver Resource Center is a 501c(3) nonprofit network of 11 Centers covering the entire state of California here to help connect you with medical resources and support in this journey. To get more information about the resources we have available to you as a California caregiver, contact us at the California Caregiver Resource Center nearest to you or join CareNav for free today.