ABCs of Disability Planning

ABCs of Disability Planning

By ABCs of Disability PlanningParentingKids & Family
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ABCs of Disability Planning episodes

  • Farewell

    This is the last episode of the ABCs of Disability Planning podcast. Thank you for listening.

    3 min
  • Pediatric Genomics and the Future of Rare Disease Diagnosis

    I reached out to Dr. Saquib Lakhani and his collaborator after reading about their discovery of the Jeffries-Lakhani Neurodevelopmental Syndrome (JELAN). Dr. Lakhani agreed to be my guest. This conversation is about a possible future for those born with a rare disease.


    I had no idea the numbers were so high, 8 - 10% of the U.S. population has a "rare" disease. I would guess these numbers are higher. I'd like us to start testing those with Cerebral Palsy and Autism to see if some individuals may also have an undiagnosed condition.


    In my perfect world, everyone will have their genes sequenced at birth. I believe gene editing will eventually help improve our healthspan, allowing us to live longer lives that we can enjoy.


    Resources:

    American Society of Human Genetics - https://www.ashg.org/


    Yale's Pediatric Genomics Discovery Program - https://www.yalemedicine.org/departments/pediatric-genomics


    Jeffries-Lakhani Neurodevelopmental Syndrome (JELANS) - https://omim.org/entry/620771

    54 min
  • Neurodiversity-affirming support by Autistics, for Autistics

    Doug Blecher founded Autism Personal Coach in 2013 in response to the near-total lack of real-life support for Autistic adults.

     

    In 2022, Doug officially confirmed his suspicions about his neurotype. APC is now happy to confirm they are fully Autistic-led (and have been all along)!

     

    All of their autism life coaches are either Autistic or chosen by Autistics. We choose them based on their commitment to trauma-informed and neurodiversity-affirming strategies. Their Coaches deeply understand burnout, sensory needs, and the importance of special interests. They empower our clients to take the lead, determine their goals, and choose their paths.

     

    They know that lived experience makes Autistic people the real experts on autism. They're here to help make their goals a reality!

    Connect to learn more:

    Website: https://www.autismpersonalcoach.com/

    IG: @autismpersonalcoach

    FB: @autismpersonalcoach

    For additional resources and more information about Visible you can find us here:

    Web: ⁠⁠⁠⁠⁠https://visiblenationaltrust.com/⁠⁠⁠⁠⁠

    Podcast (ABC's of Disability Planning) - ⁠⁠⁠⁠⁠https://anchor.fm/abcs-disability-planning⁠⁠⁠⁠⁠

    Waypoints - ⁠⁠⁠⁠⁠https://waypoints.substack.com/

    40 min
  • Increasing independence for adolescents, young adults, and adults

    Routine Success is a mobile application supporting the independence of neurodivergent young adults.

    Build routines to prompt users as needed. Schedule these routines to notify the user at the appropriate times. Schedule routines to repeat on a daily, weekly, or monthly basis as needed.

    The calendar view provides a quick overview of the day to come. Users can start routines early. Specify when reminders should be sent.
    Users can view an example of what successful completion of a particular routine looks like. Users submit the routine for review when all tasks required by the routine have been completed. Submit a picture of the finished product for feedback and approval.


    Connect to learn more:

    Website: https://sites.google.com/view/routine-success/home


    College Ready: https://www.college-ready.com/

    For additional resources and more information about Visible you can find us here:

    Web: ⁠⁠⁠⁠⁠https://visiblenationaltrust.com/⁠⁠⁠⁠⁠

    Podcast (ABC's of Disability Planning) - ⁠⁠⁠⁠⁠https://anchor.fm/abcs-disability-planning⁠⁠⁠⁠⁠

    Waypoints - ⁠⁠⁠⁠⁠https://waypoints.substack.com/

    36 min
  • Education, Expertise, and Empathy on your Medicaid Journey

    ECR Planning offers professional support to families needing to access long-term care Medicaid benefits in their loved one’s state.

    Step 1

    Meet with one of ECR's expert Benefits Advisors to determine eligibility and decide if it makes sense for your family to hire a Medicaid planner. If working with them is the right fit, you will move on to the application process. During this call, you may decide that a Benefits Consultation is more appropriate for your situation.

    Step 2

    You fill out a comprehensive intake questionnaire and discuss the answers with your Medicaid Specialist. You will have time to ask questions and clarify anything that doesn’t make sense. ECR's team then pulls together the necessary financial information to submit your completed application.

    Step 3

    ECR's team of experts and Certified Medicaid Planners™ are with you the entire time. If there is a need for other documentation as the state reviews your loved one’s application, they help you take care of that. They work with tenacity and compassion to advocate for your family until benefits are in place.


    Connect to learn more:

    Websites:

    eldercareresourceplanning.org

    medicaidplanningassistance.org

    Phone: 415-854-8653


    Kaiser Family Foundation (KFF): https://www.kff.org/


    For additional resources and more information about Visible you can find us here:

    Web: ⁠⁠⁠⁠https://visiblenationaltrust.com/⁠⁠⁠⁠

    Podcast (ABC's of Disability Planning) - ⁠⁠⁠⁠https://anchor.fm/abcs-disability-planning⁠⁠⁠⁠

    Waypoints - ⁠⁠⁠⁠https://waypoints.substack.com/

    45 min
  • Solving Medical Mysteries through Team Science

    The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health. Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies.

    Through this study, we hope to both help individual patients and families living with the burden of undiagnosed diseases and contribute to the understanding of how the human body works.

    Requirements for Online Application

    If you decide to apply for this study, you will need to answer a series of brief questions through our application portal, the UDN Gateway (link below), related to the following:

    • Contact information
    • Demographic information
    • Healthcare provider information (name, address, phone, fax, email)
    • Brief medical history questions
    • Previous evaluations
    • Travel limitations


      • A study recommendation letter from a health care provider (for example, a specialist, primary care physician, nurse practitioner, or genetic counselor) is also necessary to submit the online application to the UDN. The letter must be written in English, signed, and on letterhead. A relative cannot write a letter. The study recommendation letter must include:

      • A summary of the applicant’s medical problems
      • Date when symptoms were first noticed
      • For pediatric patients: prenatal and birth history
      • Previous diagnoses
      • History of evaluations and testing
      • History of treatments and medications
      • Current medications
      • Family history
      • Healthcare provider’s diagnostic impressions

        • We have prepared a sheet of information for you to share with your provider, as well as a set of example study recommendation letters.


        Please provide us with a 1-page patient narrative telling us your story from your perspective. We will have received the letter from your referring provider, but the narrative may help the UDN understand your medical history directly from you. Sometimes photos help the UDN team better understand the symptoms the applicant is experiencing. If you would like to provide a narrative and/or photo, please upload it to the application.

        Help Desk

        Phone: 1-844-746-4836

        email: UDNConnect.org

        For additional resources and more information about Visible you can find us here:

        Web: ⁠⁠⁠https://visiblenationaltrust.com/⁠⁠⁠

        Podcast (ABC's of Disability Planning) - ⁠⁠⁠https://anchor.fm/abcs-disability-planning⁠⁠⁠

        Waypoints - ⁠⁠⁠https://waypoints.substack.com/

        44 min
      • Connecting those with disabilities to the resources they need most

        NavigateMD provides a one-of-a-kind service to those with disabilities, their families, and others. Their platform connects these individuals with medical providers, businesses, non-profit organizations, and other resources that meet their needs. They understand that finding the help you need can often feel like a full-time job, resulting in high-stress levels and feeling overwhelmed. NavigateMD strives to make that a problem of the past with its easy-to-use, convenient, and time-efficient platform.

        For those with disabilities, their families, and others looking for resources:

        • Free to use.
        • Easily find all relevant resources that meet your needs.
        • Gain access to resources that you may otherwise not know about.
        • View medical providers, non-profit organizations, businesses, support groups, and many other resources, all in one place!
        • No more searching endlessly to find the help that you need. NavigateMD finds all resources that meet your criteria quickly and efficiently!
        • Enhances independence, reduces stress, promotes inclusion, and builds on community relations.

          • For medical providers, businesses, and non-profit organizations:

          • Generates new opportunities with individuals who have been directly matched with you, based on their needs, and the services that you provide.
          • Basic accounts are free. They include the services that you offer, as well as your contact information.
          • Upgrade to a premium account for enhanced features such as: appearing above basic accounts in search results, gaining access to real-time data tracking for activity on your account, additional profile features, and much more.
          • Premium provider accounts can be considered a business marketing expense and could be tax deductible (consult your CPA).


            • Connect to learn more:

            Website: https://navigatemd.com/

            Phone: 1-888-898-0230

            For additional resources and more information about Visible you can find us here:

            Web: ⁠⁠⁠https://visiblenationaltrust.com/⁠⁠⁠

            Podcast (ABC's of Disability Planning) - ⁠⁠⁠https://anchor.fm/abcs-disability-planning⁠⁠⁠

            Waypoints - ⁠⁠⁠https://waypoints.substack.com/

            21 min
          • Creating innovative shared living solutions for adults with disabilities

            Partners4Housing believes housing is the foundation of a good life. They are creating shared living solutions for adults with disabilities across the United States. They help you navigate the complex service agencies and secure housing for your loved one.


            Their Products:

            • Benefits & Housing Review
              • Roommate Matching Pool
                • Shared Living Development
                  • Consulting Services


                    • Resources mentioned in the episode:

                    Affordable Housing Online

                    Family Opportunity Mortgage Loan Program


                    Connect to learn more:

                    Website: https://partners4housing.com/

                    Phone: 971-599-1010

                    Facebook: @Partners4Housing

                    IG: @partners4housing


                    For additional resources and more information about Visible you can find us here:

                    Web: ⁠⁠https://visiblenationaltrust.com/⁠⁠

                    Podcast (ABC's of Disability Planning) - ⁠⁠https://anchor.fm/abcs-disability-planning⁠⁠

                    Waypoints - ⁠⁠https://waypoints.substack.com/

                    40 min
                  • Meet the new remote DSP solution from SimplyHome

                    SimplyHome’s remote direct support professional (rDSP) solution helps you give more people access to greater independence.

                    Whether you are looking for ways to expand capacity or better support your existing care teams, SimplyHome's new remote DSP solution provides real-time connectivity to real people. It’s a simple way to confidently accomplish more while providing exceptional care.

                    Both providers and end-users rate remote support services as providing more privacy, security, and independence than traditional services.

                    The SimplyHome System addresses concerns about cooking safety, falls, medication compliance, sleep patterns, wandering and elopement, aging in place, and more with a smart sensor system that alerts caregivers.
                    SimplyHome's first interview: https://spotifyanchor-web.app.link/e/PJhz5L19cNb


                    Connect to learn more:

                    Website: https://www.simply-home.com/

                    Phone: (877) 684-3581

                    Facebook: @SimplyHome

                    X: @simply_home

                    For additional resources and more information about Visible you can find us here:

                    Web: ⁠https://visiblenationaltrust.com/⁠

                    Podcast (ABC's of Disability Planning) - ⁠https://anchor.fm/abcs-disability-planning⁠

                    Waypoints - ⁠https://waypoints.substack.com/

                    44 min
                  • Real Life Access - helping businesses become more accessible

                    Real Life Access works with organizations to increase their bottom lines by making products and services accessible to people with disabilities -- and user-friendly for everyone.
                    They provide:
                    - accessibility courses, training. and consulting
                    - website audit and remediation. They can find and fix issues preventing people with disabilities from accessing your website.
                    - Public speaking about the importance of accessibility and how it can positively affect your bottom line
                    Current courses include:
                    - Access for Everyone, Digital Accessibility
                    -Access for Everyone, Physical Accessibility
                    - Access for Everyone, Cultural Accessibility
                    - Access for Everyone, Accessibility Basics
                    - See our website for descriptions

                    https://reallifeaccess.com/courses/

                    Connect to learn more:

                    Facebook: @RealLifeAccess

                    LinkedIn: https://www.linkedin.com/company/real-life-access/


                    For additional resources and more information about Visible you can find us here:

                    Web: ⁠⁠⁠https://visiblenationaltrust.com/⁠⁠⁠

                    Podcast (ABC's of Disability Planning) - ⁠⁠⁠https://anchor.fm/abcs-disability-planning⁠⁠⁠

                    Waypoints - ⁠⁠⁠https://waypoints.substack.com/

                    37 min

                  About ABCs of Disability Planning

                  From the publisher's feed

                  Frequently families like mine don't know what's available to help us, we're too focused on getting through our day-to-day. But even if we had time, we would need to know what to look for. It's my mission to introduce a new organization or individual serving those with disabilities every week.