Your Resource Connection

The needs of consumers and families can be complex and at times seem never ending.  Therapists, social workers and caregivers naturally find themselves in the role of helper.  Although we strive to do the best for those we support, it is unrealistic that this care will remain in place through the entirety of a person’s journey.  People must learn to access resources naturally occurring in their community in order successfully navigate life.  Within our newsletter series, we hope to share with you relevant community resources – everything from housing to transportation to make these challenges a little bit easier for you or someone you know.

If you have a resource you’d like featured in an upcoming newsletter, please email us details at [email protected].


Brain Injury Association of American: Butch Alterman Survivor Webinar

Earlier this month,  Gregory J. O’Shanick, M.D., BIAA’s medical director emeritus, talked about the COVID-19 vaccine. In a one-hour webinar, Dr. O’Shanick discussed the increased risks associated with COVID-19 and brain injury, what you should know about chronic inflammation, and an overview of vaccine safety, efficacy, and common myths. Click here to watch the webinar recording and scroll down for answers to our most frequently asked questions on the topic.

COVID-19 Vaccination: Frequently Asked Questions

Should I get the vaccine?
The medical leadership of the Brain Injury Association of America (BIAA) wrote an open letter encouraging all individuals with brain injury to get vaccinated in order to avoid additional neuroinflammatory issues and keep themselves, their families, and their communities safe. For immediate questions or concerns, please seek the advice of your physician or other qualified health provider.

How do I get the vaccine in my state?
Although each state is setting up its own priority sequence for vaccination, individuals with chronic health conditions are generally placed among the higher levels. Many in the medical community recognize brain injury as a chronic condition – see our position paper on Conceptualizing Brain Injury as a Chronic Disease here. Some individuals in our community have had success advocating to receive the vaccine by showing our vaccine statement and open letter to their doctors and/or vaccine administrators in their states. For information about getting the vaccine in your state, click here to find the health department website for your state or territory.

What should I do if I have a reaction after getting the vaccine?
According to the Centers for Disease Control and Prevention (CDC), you may have some side effects, which are normal signs that your body is building protection. These side effects may affect your ability to do daily activities, but they will likely go away in a few days. For immediate concerns, please contact your physician.

The CDC and the Food and Drug Administration (FDA) are tracking information through the V-safe app and the Vaccine Adverse Event Reporting System (VAERS). Both the V-safe app and VAERS collect information about adverse events (possible side effects or health problems) that occur after vaccination. Download the V-safe app to tell CDC how you’re feeling after getting the COVID-19 vaccine or click here to share your information through the VAERS online.

Greetings from the HCBS Business Acumen Center

We would like to share the following announcement from Brandeis University regarding their study on the impact of COVID-19 on people with disabilities self-directing home and community-based services.

Brandeis University is conducting a study to learn about the experiences of people receiving home- and community-based services and self-directing those services. They are interested in learning how people with disabilities are staying safe, how they are keeping their personal care attendants safe, and how they are accessing critical services and supports. Information from this study will be used to advise government agencies and providers.

•    Are you a person with a disability who receives Medicaid home and community-based services?
•    Are you above the age of 18?
•    Do you self-direct your services and supports? In other words, do you control who you hire to provide services or control a budget for services?
•    Do you live in the United States?

If you answered yes to each of the questions above, you may be eligible to participate. Participation includes one interview over the telephone or videoconference. The interview will be about one hour. Participants will receive a small gift card for their time.

If you are interested in participating, please contact Miriam Heyman, Senior Research Associate at the Lurie Institute for Disability Policy, at [email protected] or 781-736-8415.

This study is made possible by the Lurie Institute for Disability Policy and the Community Living Policy Center at Brandeis University. Funding is provided by ACL’s National Institute for Disability, Independent Living, and Rehabilitation Research

AAHD Launches COVID-19 Vaccine Survey for Adults with Disabilites

The American Association on Health and Disability (AAHD) is very concerned about the impact of COVID-19 on persons with disabilities and has launched a cross disability survey to look at vaccine hesitancy and access challenges people with disabilities are encountering. The objective of the  COVID-19 and Vaccine Survey for Adults with Disabilities is to better understand the reasons adults with disabilities have or will take the vaccine, are not sure about taking the vaccine, or have decided not to take the vaccine.  This information will be shared with the disability community, health and public health professionals, policymakers, and researchers.

The survey will be open from March 12, 2021, to March 26, 2021 at the following link:

The average completion time for the survey is less than 8 minutes.  The survey asks a  series of disability-specific and general questions about vaccine decisions.  Please feel free to circulate the survey.

Alternate formats such as large print, Braille, or electronic versions of the survey are available upon request to [email protected].  For more information about the survey contact: Charles E. Drum, MPA, JD, PhD at [email protected] or (301) 545-6140, Extension 5.

Thanks for your support!

Your friends and colleagues at AAHD


Proposal for HCBS Access Act

Lawmakers seek feedback on proposal to make home and community-based services mandatory under Medicaid, end the institutional bias in long-term care

WASHINGTON, D.C. – Congresswoman Debbie Dingell (D-MI), Senator Maggie Hassan (D-NH), Senator Bob Casey (D-PA), and Senator Sherrod Brown (D-OH) today released a discussion draft of the HCBS Access Act for stakeholder feedback. The proposal seeks to mandate HCBS in Medicaid to provide critical services, creating national, minimum requirements for home and community-based services, and make it possible to enhance those services and the long-term care workforce. See here for discussion draft text and here for a memo seeking stakeholder input.

Under our current long-term care system, too many people cannot access the care they need in their homes and communities even though these are the environments where most people prefer to receive care. The patchwork system that currently exists through Medicaid HCBS waivers, where access to services depends on the state in which you live, undermines the much-needed creation of a durable system. States have been using a waiver process to provide long-term services and supports for almost forty years.

To build on the discussion draft, the offices are currently seeking feedback on:

  • Provider pay and rate structures of States for HCBS;
  • Workforce development, including but not limited to, wages and benefits for direct service workers and personal care attendants as well as training and recruitment;
  • HCBS infrastructure in States that support family caregivers, provider agencies, and independent providers, including but not limited to, housing, transportation, employment and enrollment systems and processes;
  • Other related policies and programs, such as Money Follows the Person and spousal impoverishment protections.
  • Many other critical items to further expansion and improve access to HCBS for those who desire the supports.
The offices ask that any feedback be provided, in writing, by Monday, April 26 by sending your comments to [email protected].

Going Home: a TRANSITION from a nursing home program

For Kansas residents
Transition means moving home from a nursing facility. Sometimes, a person stays in a nursing home because they do not have the means to go home or start over. A person doesn’t always need the higher level of service delivered in a nursing home when they could receive home and community-based services.
GOING HOME is a grant-funded program to help a person return home from the nursing facility with the following services:
  • Options Counseling
  • Assessment
  • Person Centered Technology, including training
  • Assistance finding housing & coordination of services & resources (including purchase of household items, first month’s rent & deposits, if needed)
  • Enhanced Case Management
A team with more than 100 years of experience will help to ensure the person is safe, not isolated, and has the appropriate support and services.
Who can use this program? ANYONE interested in seeking to return home from a nurs-ing home. A person may qualify if they private pay, receive Medicare, Medicaid, or is dua leligible.It is important for family or a community member to be available and provide informal support.
To make a referral or for more information, call the Statewide ADRC Call Center:1-855-200-2372.
Partners to help transition a person from a nursing home include:
  • Assistive Technology for Kansans
  • Central Plains Area Agency on Aging
  • SouthWest Kansas Area Agency on Aging
  • Topeka Independent Living Resource Center
Make a Referral