Are there NIDILRR-funded resources for people who are new to disability?

You’ve just finished meeting with the doctor. He or she shared information about a new diagnosis or condition. Maybe you’re the one now facing life with a disability (either permanent or temporary) or maybe you will be supporting a family member with a new condition. Either way, you probably have a lot of questions about managing health, returning to work or finding a new job, or changing your living situation. How will this disability affect my marriage? My finances? My ability to work? The good news is there are many resources available to help you answer these questions. In this post and the next, we’ll share items from the NIDILRR community and elsewhere to help you get started on this new path. First up, resources from the NIDILRR community:

Finding Treatment:

You or your family member are ready to move out of the hospital and into a rehabilitation setting. What does that mean? What is the difference between acute rehab and subacute rehab? How do I know if I’ve picked a good rehab center? Download the Consumers Guide to Choosing a High Quality Medical Rehabilitation Program, originally developed under a NIDILRR grant by Boston University and National Rehabilitation Hospital (Now MedStar). It has checklists, questions to ask at a facility, and a great glossary of terms.

Finding Technology

Whether you need to add a ramp to your home, find a modified van, get a screen enlarger, or find a new carry-all bag for a walker, you’ll find these kinds of assistive technology and much, much, MUCH more at our sister project AbleData. Browse by category or search for specific products or activities (like cooking or reading). Take the time to browse through the factsheets and articles while you’re there!

Newly Injured or Diagnosed:

New to spinal cord injury (SCI)

New to traumatic brain injury (TBI)

  • InfoComics use a graphic-novel format to tackle some of the challenges families face when a loved one has a TBI, originally developed by the University of Washington TBI Model System Center
  • Family Support After TBI, developed under a NIDILRR grant, is a training program to help families manage the cognitive, behavioral, and social changes that can happen after TBI

Hot Topic Modules from the Model Systems Knowledge Translation Center present factsheets and videos on issues you and your family may be facing:

New to a Secondary Condition/Aging with Disability

You may not be new to your disability, but you may be experiencing age-related disabilities or secondary/co-occurring disabilities:

  • People with psychiatric disabilities often face issus with obesity, hypertension, and diabetes. The RRTC on Psychiatric Disabilities and Co-Occurring Medical Conditions has a diabetes toolkit to meet their needs:
  • People with physical disabilities are living longer and experiencing age-related disabilities on top of their existing conditions. The Aging RRTC offers factsheets and plain language articles to help

New to Caregiving or Working with a Caregiver

People new to disability may also be new to relying on and working with a caregiver. On the other side of the coin, family members may be new to providing care for a loved one.

New to Work with a Disability

You’re ready to return to work or find a new job. What can  you expect in the workplace? How can technology help me? How do I talk to my employer about my disability?

New to Self-Advocacy

You may find yourself in the position of being your own best advocate, whether it’s for healthcare, legal rights, access to your community, or even bigger policy issues.

New to Parenthood/Grandparenthood with a Disability

Life changes and new family members arrive! Learn about your rights as a parent, and tools to help you take care of someone new.

  • The National Center for Parents with Disabilities and Their Families at Through the Looking Glass has an array of guides, reports, and services to help parents understand their rights and support their families.
  • AbleData introduces you to tools and technology to help parents with disabilities with everything from changing diapers to getting to school on time. Find it in the collection of AT guides here:

New to Meeting/Working with/Serving People with Disabilities

Maybe you have a new co-worker with a disability. Perhaps you have customers with disabilities. Or it could be your son’s playmate’s mom is a person with a disability. You may not have a lot of experience in talking with, working with, or serving people with disabilities. These resources may help: