[WEB SITE] This is all new to me! – Collection Spotlight from the National Rehabilitation Information Center.

This is all new to me!

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 http://www.msktc.org/tbi/infocomics
    • 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 http://cbirt.org/family_support/
  • 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:  http://www.cmhsrp.uic.edu/health/diabetes-library-home.asp
  • 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 http://agerrtc.washington.edu/info

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.

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:

This is all new to me (part II)!

Yesterday we introduced you to a library full of excellent resources from the NIDILRR community aimed at helping people new to disability or entering new phases in life with a disability. Today, we continue with organizations, agencies, and resources from the greater disability and rehabilitation community.

First, let us point you to our Librarian’s Picks, brochures that list agencies, organizations, and websites targeting specific topics: Advocacy, Aging, Assistive Technology, Autism Spectrum Disorder, Caregiving and Caregivers, Children with Special Needs, Education, Employment, Finding Rehabilitation Services, General Spanish Language Resources, Independent Living, Mental Health, Sensory Disability, Spinal Cord Injury, Stroke, Traumatic Brain Injury, and Universal Design. Some of the resources we’ll cover here appear in these brochures as well. These are also available in Spanish.

Finding basic information about a disability, treatment, or drug

Many people will turn to their favorite search engine and enter a few key words. What comes back may be a mountain of information, not all of it helpful. Probably the best and most reputable resource we can recommend to find out about a specific condition, treatment, or drug is Medline Plus, maintained by the National Library of Medicine. Every article is reviewed by a health professional. You’ll find basic definitions, causes and treatments, and recommendations for related resources. Many articles also link to videos, clinical trials, and even peer-reviewed journal articles. If you want to dive deeper, search PubMed at NLM for abstracts of journal articles, books, and reports (more than 10 million volumes!).

If you do turn to your favorite search engine, please take a few minutes and read through these resources from NLM on evaluating health information: https://medlineplus.gov/evaluatinghealthinformation.html

Find a resource center

The Administration for Community Living has several resource centers that connect people to information and support resources

Find a disability-specific organization

Often, the best source of information and support is someone who’s “been there, done that.” Disability-specific organizations are run by people with personal and professional experience in a disability, such as stroke (National Stroke Association), mental health (National Alliance for Mental Illness), or vision loss (National Federation of the Blind). Visit our Disability Resources pages or search our Knowledgebase to find an organization that meets your needs.

Find a professional organization

Many professions have national organizations that provide certifications, educational programs, and other supports for their members. They may also have “Find a Professional” or other resources to connect the general public to their members or professionals in their field. You’ll find several in our Finding Rehabilitation Servicesbrochure.

Find local help

Have you called 211? 211 is community-level information and referral. Just dial those three numbers (2-1-1) and a real, live person will answer, ask you some questions, and point you to resources in your community to help with support, treatment, benefits, financial assistance, and much more. You can also look up your 211’s website and search their resource databases. Many of these centers offer information services in languages other than English.

Find your nearest public library

When was the last time you visited your public library? We routinely recommend that our patrons visit or call their local library for assistance. Ask to speak with a reference librarian, tell them the topic you’re interested in, and we guarantee you’ll walk out with a stack of books and a ream of printouts from good-quality online sources. Find your library at http://www.publiclibraries.com/ or call 211.

Please note that these resources primarily support people with disabilities and their families in the US. If you are outside the US, please contact us and we’ll do our best to identify an appropriate resource in your home country.

Source: This is all new to me! | Collection Spotlight from the National Rehabilitation Information Center

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