Category: Education

COVID-19 Materials for People with Intellectual and Developmental Disabilities (IDD) and Care Providers

With the number of COVID-19 cases increasing, and programs and schools reopening, it is important to continue to share info and use good practices to stay safe.

The Centers for Disease Control (CDC) created plain language materials for people with IDD and care providers.

The materials on their page were made to help make communicating about COVID-19 a little easier. Pick from videos, posters, social stories, and interactive activities to best meet your needs.

Areas covered include:

  • Getting a Covid-19 Shot
  • Washing Your Hands
  • Getting a COVID-19 Test
  • Masking
  • Social Distancing
  • Information for Caregivers

Please look at the CDC info and share with others.

COVID-19 Materials for People with Intellectual and Developmental Disabilities and Care Providers

Advanced Leadership Fellowship Opportunity – Leadership Education in Neurodevelopmental & Related Disabilities (LEND) Program

Leadership Education in Neurodevelopmental & Related Disabilities (LEND) Program

Deadline for applications is June 1, 2021

September 2021 to June 2022

$12,000 stipend available

The LEND Program at the E.K. Shriver Center/UMass Medical School in Worcester, MA prepares professionals, persons with disabilities, and family members to influence policy and clinical practice on behalf of children with developmental disabilities and their families.

We are looking for applicants who:

  • have relevant experience in the disability field and leadership potential
  • have professional degrees in health and/or clinical disciplines, disability studies, or policy. Other professional qualifications may be appropriate.
  • are individuals with disabilities, self-advocates, or family members of people with disabilities interested in pursuing careers in disability policy/systems change
  • LEND coursework can be credited towards a Master of Public Administration (MPA) from Suffolk University at reduced tuition.

~ The LEND program involves a minimum commitment of 1 day/week ~

For questions or more information contact:

For additional program information and application forms, visit our website:  https://tinyurl.com/ShriverLENDApplication

Eunice Kennedy Shriver Center News

We are excited about being able to change the name on our Facebook page from INDEX/Shriver Center/UMass Medical School to Eunice Kennedy Shriver Center/UMass Medical School. This change will allow us to reach a wider audience and to highlight all of the programs that we have to offer.

INDEX provides up-to-date information about programs, agencies, physicians, consultants, and dentists serving people with all disabilities in Massachusetts. We offer information and referral by email and phone. INDEX is only one of 11 programs of the Eunice Kennedy Shriver Center.

The Eunice Kennedy Shriver Center creates and delivers training programs that teach and train those who want to enhance the lives of people with disabilities. We develop and provide a range of information and resources to individuals with IDD and autism spectrum disorder and their families – plus clinicians, educators, and human services agencies.

The Eunice Kennedy Shriver Center was founded in 1970 in Waltham, MA, with a mission to improve the lives of people with intellectual and developmental disabilities (IDD). The Center was named in honor of Mrs. Shriver and her lifelong commitment to championing the rights of individuals with IDD, and to influencing public perception of their value and potential contributions to their communities.

In 2000, the Shriver Center merged with the University of Massachusetts Medical School in Worcester, enhancing its resources and expanding its expertise. In 2013, the Center relocated to two locations in Massachusetts, in Worcester and Charlestown. That move increased the statewide impact of the Center’s programs, expanded access to clinical and research populations, and has enhanced development of its training and service programs.  Being part of the University of Massachusetts Medical School in Worcester has further strengthened our ties to the entire state of Massachusetts.

The Eunice Kennedy Shriver Center is celebrating its 50th anniversary and its 20th anniversary of being part of the University of Massachusetts Medical School.

We look forward to sharing Eunice Kennedy Shriver Center news and events with you. We also look forward to continuing to post news and information about programs and services available to people with all disabilities in Massachusetts.

Please continue to like and follow our Facebook page.

INDEX News and Updates

The summer season is ending and people are thinking about school re-openings, and planning for Fall. In this blog, we’d  like to share a few things that people may find useful and interesting.  

 

Shout Out to Randall Browne PC Services Engineer of UMass Medical School (UMMS)  IT Department! INDEX would like to share our appreciation of Randall Browne’s outstanding work.Randall Browne, PC Services Engineer of UMMS IT Department provided lead technical support for UMass Medical School’s augmented printing of the Department of Transitional Assistance’s Electronic Benefits Transfer (EBT) Cards. Several thousand EBT Cards quickly and efficiently printed every week. His efforts allowed thousands of People w/Disabilities to get EBT cards.

 

Check out our recently updated COVID-19 Information pages.  We work to make sure information on these pages is up-to-date. INDEX has included  general COVID-19 information and information for people living in Massachusetts.  We also have plain language information and information for Self-advocates.

 

Massachusetts schools are preparing to re-open in in-person, hybrid and remote learning settings. Check with your town or city to find what your local schools are doing.  Many school districts have shared their re-opening models (xls).

 

Massachusetts Department of Elementary and Secondary Education has a page that  provides updated COVID-19 Information and Resources.  It includes information for schools about  COVID-19 and will be updated as additional guidance is available. The page was updated most recently on 8/31.

Info for Self-Advocates

We recently added a new page Info for Self-Advocates on DisabilityInfo.org that lists COVID-19 plain language information and videos.  Tools l ike communication boards and health passport have been added.  Support tips and things to do while sheltering in place may also be useful for Self-Advocates, caregivers and family.

Info for Self-Advocates

Wheelchair and Assistive Technology Users ATTENTION: PRECAUTIONS for COVID-19

If you push a manual wheelchair or use other types of assistive technology (AT), there are unique precautions you should take related to hand washing. COVID-19 can survive on the surfaces of your wheelchair or AT which you come in frequent contact with, such as the handrims. Any virus that might be on your hands is transferred to your handrims as you push your wheelchair.

WC AT COVID-19 Precautions 1mb 2020-03-27 0745 (pdf)

Information courtesy of Peter Axelson MSME, ATP, RET Manual wheelchair user and leader of Beneficial Designs.

 

Making Documents Accessible

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Do you want people with disabilities to read your writing? You should make it accessible.

  • Describe pictures in your documents to help people who have trouble seeing. Make your descriptions easy to understand.
  • Newer versions of Microsoft Word have an accessibility checker. Run it to see if you need to change anything.
  • Write short, clear sentences.
  • When you are making PDFs, websites, or printed documents, use fonts that are easy to read. These fonts include Trebuchet, Verdana, and Tahoma. They are good because you can tell some letters like capital I and lowercase L apart.
  • If you can, print documents in Braille. Many blind people need Braille to read printed documents.

Getting Ready for Emergencies with Persons with Disabilities

"Woman hugging child"

Emergencies happen often. A family member might get badly hurt. Your home might lose power. You may need to leave your home because of a storm. Emergencies are hard for my sister, Emily. Emily has Down syndrome and autism.

There are ways to prepare for emergencies ahead of time. There are also ways to deal with emergencies when they happen.

Tips on how to get ready for emergencies ahead of time:

  1. Write Down Your Routine. Make a list of your family’s daily routine. Keeping a routine is often important for people with autism. It is helpful to have this written down to help your family keep up with it in an emergency. More information on autism and routines here.
  2. Ask for Help. Make a list of people who are able to help your family. One way of doing this is a phone tree. You will just need to call one person. That person might be able to help your family. If not, then it will be that person’s job to call the next person on the call list. These are phone tree templates.
  3. Pack a Bag. It is helpful to have an emergency bag packed if you need to leave home in a hurry. Download a packing list for people with disabilities. 

Tips on how to deal with emergencies when they happen: 

  1. Be Patient. Emergencies are stressful. People might act differently than usual. Try to understand how yourself or your loved one with disabilities might be feeling. Also, try to think about why people might be acting certain ways.
  2. Try to Have Fun. Try to find ways to include fun in whatever you might be dealing with. For example, if the lights go out—you might build a fort with sheets. Sit inside with flashlights.
  3. Be Helpful. It can be hard to sit still when something bad happens. It might be good to help others if it is safe.

 

For more info on getting ready for emergencies for yourself or your loved ones with disabilities, please visit: the Center for Disease Control Emergency Preparedness website or the UMass Medical Emergency Preparedness and Response website.

Finding a Balance: How to be a Sister or Brother (Sibling) Caregiver of a Person with a Disability

 

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My sister Emily has Down syndrome and autism. I have helped take care of Emily for most of my life. Most of the time it feels normal to care for my sister and keep the usual sister bond with her. Sometimes it is hard to care for her and be a sister.

Here are some tips on taking on these two roles:

The Sister or Brother (Sibling) Role:

  1. Be a friend. Treat your sister or brother (sibling) with disabilities like any other brother or sister. Stand up for each other. Share your secrets and have some fun.
  2. Don’t be a tattle tale. Your mom and dad need to know some things. But they don’t need to know everything. There is no need to get your sister or brother (sibling) in trouble.
  3. It’s okay to fight. It is okay to get into fights with your sister or brother (sibling). My sister Emily and I argue about sharing clothes. We also get in fights about if we want to go out for pizza or stay at home to watch TV. Sometimes we want different things.
  4. No parents, no rules. We like to live by our saying “no parents, no rules” when our mom and dad are not home. Okay, there are some rules. But bedtimes are later. We also might eat too much junk food.

A Caregiver Role:

  1. Be serious. Sometimes you might care for your sister or brother (sibling). It is important to pay attention. You might need to do serious jobs like give your sister or brother (sibling) medicine.
  2. Be nice. It is easy to pick fights over things like who gets the last piece of candy. But sometimes your sister or brother (sibling) might feel sick. It is a good idea to let go of sister or brother (sibling) fighting for a while. Just be nice like a nurse would be.
  3. Ask for help. Sometimes it is okay to ask your mom or dad to find another person to take care of your sister or brother (sibling). You are busy and growing too. It is okay to take time for yourself!
  4. Talk to other sister or brother (sibling) caregivers. Caring for your sister or brother (sibling) is special. It is something you may want to talk about with other sister or brother (sibling) caregivers. Meet other sister or brother (sibling) caregivers here. 

To learn more about being a sister or brother (sibling) of a person with a disability, please visit the Massachusetts Sibling Support Network website.

We all Have Our Fears: Unfiltered, Runaway Thoughts of a Sibling

Always Thinking

Sometimes I get worried thinking about my 30-year old brother, CJ. I think of how our parents are getting older. I think about where he can get help since he is not in school. I think of what he needs to be healthy. I think of how people treat him.

All of this thinking takes me down a path of questions with no end.

What If…

What if something bad happens to my parents?  

What if my parents’ health gets worse?

What if my mom can’t care for my brother CJ anymore?

What if my dad can no longer work and provide for the family?

What if CJ does not get the help he needs?

What if I have to stop working to care for CJ?

What if CJ gets upset because he can’t express his feelings?

What if he hurts himself again?

What if something bad happens to CJ because people are afraid of him?

What if someone calls the police on him again?

What if something bad happens to CJ because people are afraid of him?

What if someone calls the police on him again?

What if they put him in the hospital again?

What if they give him drugs to make him sleep again?

What if people keep treating CJ like he is not human?

For more information and tips on navigating through life as a sibling of someone with autism, refer to A Siblings Guide to Autism: An Autism Speak Family Support Tool Kit.