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:
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.
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)
- Adjusting to Life After SCI: Sadness, Grief, and Moving Forward, articles, videos and tips from the Northwest Regional SCI System Centerhttp://sci.washington.edu/adjustment/index.asp
- Also check out their Tips from the Wheel World, submitted by people with SCI for people with SCI http://sci.washington.edu/tips/index.asp
- See this series of videos on everything transferring from the floor to the chair, to safe workouts at SCI-Health videoshttps://www.youtube.com/user/HealthyTomorrow (orginally developed by the completed Rehabilitation Research and Training Center on Prevention of Secondary Conditions in Rehabilitation from 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.
- The RRTC on Independent Living developed a guide for people new to working with caregivers. Download the Step-by-step Guide to Managing Personal Assistants: Consumer Guide from our website.
- The NWRSCIS hosted two SCI forums on just this topic, one from each side of the story (managing caregivers and providing care): http://sci.washington.edu/caregivers/index.asp
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?
- Check out The Hot Topic Module on returning to work after burn injury mentioned above.
- If you’re a person with SCI, watch these videos from the Beyond 90 Days project, where people share their real-world experience of returning to the workplace: https://vimeopro.com/muscchp/beyond-90-days-videos-for-professionals
- The Working Well with a Disability program from the RRTC on Disability in Rural Communities helps people with disabilities and chronic conditions to balance health and work. Find a local provider at http://livingandworkingwell.ruralinstitute.umt.edu/working-well-program/
- The RRTC on Employment for People with Physical Disabilities features an Accommodations Corner, highlighting examples of successful use of technology, ergonomics, and accommodations in the workplace: http://vcurrtc.org/resources/accommodations/index.cfm
- If you’re a young person with a mental health condition, see these factsheets and videos on finding, getting, and being successful at a new job, from the RRTC on Learning and Working During the Transition to Adulthood http://www.umassmed.edu/TransitionsRTC/publication/
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.
- Project TEAM, developed under a NIDILRR grant, is a peer-led program to give teens with intellectual disabilities the tools and skills to advocate for changes in their environment. http://sites.bu.edu/yell/research/project-team/
- The Self-Determined Career Development Model, also developed under a grant, guides people with disabilities in determining and achieving their employment goals. http://www.ngsd.org/professionals/self-determined-career-development-model
- The RRTC on Psychiatric Disabilities and Co-Occurring Medical Conditions also has self-determination tools for people with psychiatric disabilities to direct their own care and related services http://www.cmhsrp.uic.edu/nrtc/tools.asp
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. http://www.lookingglass.org
- AbleData introduces you to tools and technology to help parents with disabilities with everything from changing diapers to getting to school on time: http://abledata.com/sites/default/files/AT%20for%20Parenting%20with%20a%20Disability_PDF.pdf
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:
- The ADA National Network offers ADA and Hospitality, a series of tools to help hotels, restaurants, and other hospitality industry organizations to be more inclusive and practice good etiquette and customer service: http://www.adahospitality.org
- The Rocky Mountain ADA Center also offers a free Disability Etiquette course, covering the basics of everyday interaction with people with disabilities. http://www.rockymountainadatraining.org/login/index.php
- Teachers can include parents with disabilities in the classroom, and help their students in understanding disability, with this guide from Through the Looking Glass http://lookingglass.org/pdf/Classroom-Awareness-Parents-with-Disabilities-2013-TLG-.pdf
- Learn about how to write about disability using person-first language with this guide from the RRTC on Independent Living (also available in Spanish) http://rtcil.org/products/media
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
- Paralysis Resource Center – operated in partnership with the Dana and Christopher Reeve Foundation. Check out their resources for people new to paralysis and spinal cord injury. (Also available in other languages.)
- Limb Loss Resource Center – operated in partnership with the Amputee Coalition of America. Browse by topic or by type and location of limb loss.
- Autism NOW – operated in partnership with The Arc.
- National Alzheimer’s Call Center – operated in partnership with The Alzheimer’s Association
- Eldercare Locator – Connects you to the nearest agency on aging or an aging and disability resource center.
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.