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Self-Advocate Guide

Many things have changed since we were asked to stay at home because of COVID-19. Now, our state government has plans to allow people to start doing some of the things that were closed or limited. This guide may help self-advocates: 

    • Think about what, when and how you will start to do things in the community.
    • Share your thoughts with people important to you.
    • Look at what you agree with, what you may not be sure about, and what you do not agree with. 

Below you will find resources that may be helpful while using the guide to help plan and prepare for getting back into the community. 

Figure out if you want to do things in the community right now. Community usually means places to go and things to do outside of your house. 

It is okay to have mixed feelings about this. You might be excited and nervous at the same time. Your family and friends might also be both excited and nervous about this. 

 

Going into the Community
This resource provides information about understanding your feelings and steps to get ready to go out into the community.

 

Finding Activities in Your Community
This resource provides suggestions for finding activities in your community for when you’re ready.

 

Trajectory for Planning
This tool highlights past life experiences that are leading or moving you away from your vision and then provides space for goals and things to avoid moving forward.

Figure out if you have physical health concerns. Some health concerns may place you at higher risk for COVID-19. You will need to think about your physical health when deciding what you want to do in the community. 

 

PA Department of Health COVID-19

This website has information from the Department of Health about COVID-19 and resources for individuals. 

 

COVID-19 and Monitoring Physical Health Status

This resource provides information about COVID-19 and tips for monitoring your physical health. 

 

Not Feeling Well Social Story

This social story provides a visual guide for what to do if you’re not feeling well. 

 

Checklist for Symptoms of COVID-19

This resource is a checklist that can be used to monitor symptoms of COVID-19.

 

Advocating for My Health During COVID-19

This resource provides tips on how to advocate for your health. 

 

Being a Careful Reader of Coronavirus Information

This resource provides information on where to go for trusted information about COVID-19. 

 

Advocating for Healthcare Needs

This video provides information on advocating for healthcare needs. 

 

 

Figure out if you know how to keep yourself healthy. You can do thinkgs to lower your risk for getting COVID-19. These things are called “infection control measures”. 

When you’re in a store or community building it’s important to wear a mask over your mouth and nose. There may be times when you or others can’t wear a mask for safety. We need to do what is right for us, but rules like washing hands, are meant to keep us healthy.  

 

Wearing a Mask Social Story

This is a visual resource that explains the importance of wearing a mask and finding one that’s comfortable. 

 

Social Distancing Social Story

This is a visual resource that explains social distancing, how to maintain a safe distance and when you need to social distance. 

 

Hand Washing Social Story

This is a visual resource that explains the importance of hand washing, and how to properly wash hands.  

 

Hand Washing for Self-Advocates

This is a set of videos that explains hand washing and a demonstration of how to properly wash hands. 

 

Changes in the Community

This resource provides information about change that you may come across when you go back into the community. 

Figure out if you have any mental or behavioral health needs. Mental and behavioral health refers to how people think, feel, and behave. 

Stress can impact how people think, feel, or behave. We all experienced stress from dealing with COVID-19. Some people had very difficult things happen to them like being in the hospital or having a family member die. Very difficult things which cause a lot of intense stress are called trauma. 

 

What is Trauma Social Story

This is a visual resource that explains what trauma is and when someone may experience trauma. 

 

Be Well, Think Well Mental Health Resources

This is a collection of mental health resources with information about anxiety and depression. Relaxation and coping strategies are included.  

 

Finding and Choosing a Therapist

This resource provides information on how to find and choose a therapist.   

 

Managing Stress and Emotions

This video provides information and tips on how to manage stress and difficult emotions you may experience. 

 

Dealing with Negative Thoughts

This video provides information on how to manage negative thoughts. 

ASDNext Blog: The Journey of Grief

This blog, written by a young adult with autism, talks about dealing with grief after the loss of a loved one. 

ASDNext Blog: Art and Expression in Times of Stress

This blog by a young adult with autism talks about using art as a way to deal with stress. 

Figure out if you need to make changes to your daily routine. A daily routine is how you do things like eating and sleeping each day. 

Having a good daily routine helps you feel better. It makes it easier to get things done. Sometimes when people are stressed they have a hard time keeping a good daily routine. This can make it hard to do all the things a person might want to do during the day. 

 

New Rules in Familiar Places

This video provides information about some of the new rules that may be in place when you go out in the community. 

 

Being Flexible and Starting New Routines

This video provides information and tips on starting new routines and learning to be more flexible.  

 

Visual Resources

This is a collection of resources about visual schedules that can be helpful in keeping routines and schedules. 

 

ASDNext Blog: Time to Change 

This blog was written by a young adult with autism about how they handle changes. 

 

ASDNext Blog: Can’t Sleep

This blog was written by a young adult with autism about how they manage difficulty sleeping because of the changes related to COVID-19. 

Quick Guides in the Life Experiences Series

These guides can help you think about what you want your days to be like and how your routines can lead you to the life you want. 

Focus on Transition to Adulthood

Focus on Adulthood

Focus on Aging

Figure out if you have the right services and supports. 

Things will be different now in the community. There might be new rules to follow for things you like to do. You might have to go different places because some places you like might now be open yet. Your needs may be different now because of this. You may need new or different services and supports to be successful in the community. 

Telehealth

This resource provides information about using telehealth to stay connected to services and supports during social distancing. 

 

Staying Connected at Home

This resource provides information on staying connected to friends, family, and support staff during times of social distancing. 

 

ASDNext Blog: Staying Connected

This blog was written by a young adult with autism about how they are staying connected to others during times of social distancing and isolation. 

 

Person Centered Portfolio for Planning 

This portfolio is designed as a booklet printed on 11×17 paper. It includes the Trajectory Planning Tool and the Integrated Supports Star. This tool can help you communicate your vision to support and service providers. 

Connecting with other people who have similar experiences can be helpful. The organizations below have resources and information that may be helpful for your and your support team in planning for going back into the community. 

 

Self Advocates United as 1 (SAU1)

Self Advocates United as 1 is a group of people with envision a world where people with developmental disabilities and their families are united to share knowledge, empower others, and use their voices to transform their communities and people’s lives. 

 

Health Care Quality Units

The Health Care Quality Units (HCQUs) work to support and improve the health information and knowledge for the intellectual disabilities community by building capacity and competency within the physical and behavioral health care systems. 

 

Support Groups

This resource provides a listing of known support groups by county, across the state. Most of these support groups are autism-specific, but some are general support groups for a wider disability audience. 

 

Autism Services, Education, Resources and Training (ASERT)

ASERT is a partnership of providers involved in the treatment and care of individuals of all ages with autism and their families. 

 

PA Family Network

PA Family Network provides information, connections and support through Family Advisors. The PA Family Network can help individuals with planning using the Charting the LifeCourse materials.