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How to be an advocate for people with disabilities

The resources available to support your loved one can often be finite, limited, or difficult to access, which means one of the most important roles you can play as a guardian is that of an advocate. Others will likely join your advocacy team, but you’re one of the few who will remain constant.

As an advocate, you’ll want to consider these things.

Understand the diagnosis and all symptoms

Do your homework to better understand everything about your loved one’s diagnosis. Use multiple sources when researching—you can often find more information through your medical providers, disability-specific nonprofits, or through other caregivers.

You can also find many disability-specific organizations online, such as Autism Speaks® or National Down Syndrome Society®. In addition, several nonprofits that serve persons with disabilities are dedicated to education, support, and advocacy. Many of these organizations will have local chapters to allow for greater and more personalized engagement.

Know the rules of engagement

Learn as much as possible about the eligibility guidelines and rules for accessing support services for your loved one. This includes how and by whom decisions are made.

Keep good records

Many caregivers choose to put everything in writing, whether it’s their first request or a summary of any meeting or conversation. Having a good system, whether digital or on paper, will keep you on track as you create and update your plan.

Know your rights

Laws and regulations give people with disabilities certain rights, so be sure to acquaint yourself with those rights, and be ready to ensure those rights are being enforced for your loved one.

Here are a few of the major federal protections: 

Master your negotiation skills

Your ability to communicate and collaborate with others will be an invaluable skill in finding resources for your loved one. Asking good questions, listening, and finding “win-win” situations for both your family and the service provider will often get the best results.

Keep your documents safe—for free

Store, access, and share digital copies of your family's most important documents with FidSafe®.

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This information is general in nature and provided for educational purposes only.

The third parties mentioned herein and Fidelity Investments are independent entities and are not legally affiliated.

Fidelity does not provide legal or tax advice. The information herein is general in nature and should not be considered legal or tax advice. Consult an attorney or tax professional regarding your specific situation.