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Family and Caregiver Guides

These guides are designed to provide a road map for families and caregivers to determine their loved ones strengths and needs when it comes to being ready to go back into the community. The information from the road map can be used to help plan services and supports moving forward. Click the link below to access to the road map. To complete the road map for your family member, either print the resource and complete by hand, or save the document to your computer to complete electronically. 

The resource guide is designed to accompany the road map, providing links to resources and information to help families and caregivers address potential areas need. Below you will find the information and links that are included in the resource guide.

Charting the LifeCourse is a framework that was developed to help individuals and families of all abilities and at any age or stage of life develop a vision for a good life, think about what they need to know and do, identify how to find or develop supports, and discover what it takes to live the lives they want to live. Individuals and families may focus on their current situation and stage of life but may also find it helpful to look ahead to start thinking about life experiences now that will help move them toward an inclusive, productive life in the future. The framework is designed to help any citizen think about their life, not just individuals known by the service system.

These tools can be used by families and individuals to help plan across many of the areas reviewed in this guide, and to help in the process of preparing individuals to get ready to go back into their communities.

The LifeCourse Toolkit is a product of the UMKC IHD, UCEDD. More materials at lifecoursetools.com.

 

PA Community of Practice for Supporting Families

PA Life Experiences and Questions Booklet: A Guide for individuals, families, and professionals

Daily Life and Employment

Life Trajectory Worksheet

Tools for Developing a Vision

Integrated Support Options

Integrated Support Star

Integrated Long Term Service and Support Needs

LifeCourse Portfolio

Early Childhood Life Stage Guide

School Aged Life Stage Guide

Transition Aged Life Stage Guide

Adulthood Life Stage Guide

Aging Life Stage Guide

Daily schedules and activities have changed as a result of COVID-19. Schools, day programs, and work sites have all closed to try and prevent the spread of the disease. With the counties across the state starting to open up again, this means people will be able to go back out into the community.

 

However, not everyone may be ready to head back out as soon as things open. For some individuals, there may be significant anxiety around going back out into the community. One of the most important steps in helping individuals get ready to go back into the community is to first determine if they want to. The following resources can help families and caregivers discuss and plan with their loved ones how ready they are to resume their community activities once it’s safe.

 

Talking About Going Into the Community

This resource can help you discuss going back out into the community with your family member. It provides tips on how to start the conversation, helps them identify their feelings, and offers activity suggestions based on different levels of readiness.

 

Individualizing Support for Individuals with Autism/ID

This resource provides information on how to create a person-centered approach that is focused on individual strengths and abilities when working with individuals.

 

Future Planning

This resource provides information on how to support individuals to plan for their futures. 

 

Finding Activities in Your Community

This resource provides tips and suggestions for places to find events or activities going on in your community. 

 

Tips to Increase Social Engagement

This resource provides tips and suggestions for families and caregivers on how to potentially increase social engagement. 

 

Due to COVID-19, there is an increased risk of becoming sick. However, instead of worrying about the risk, it is important to become educated in how to maintain healthy lifestyles and wellness. Now, more than ever, is the perfect time for families and caregivers to educate themselves, refocus and make physical health a main priority in their lives. In order to protect loved ones, communities, and maintain safety, it is important that COVID-19 guidelines are followed closely while we make steps reintegrating into our communities.

 

The following resources have been created in order to help families and caregivers guide and support their loved ones in focusing on enhancing and protecting their physical health.

 

Preventing COVID-19 and Monitoring Physical Health Status

The purpose of this resource is to provide families and caregivers with ways to prevent getting sick from COVID-19, as well as information about getting tested. This resource also covers information on how this virus is transmitted, the symptoms to look for, and how to monitor the physical health status of individuals and caregivers.

 

Responding to COVID-19 in Pennsylvania

This guide from the Pennsylvania State Government, provides up-to-date information and resources for individuals, families and businesses. 

 

Pennsylvania Department of Health COVID-19

This website provides information on symptoms, testing, how to prevent the spread, FAQs, resources and Pennsylvania specific data related to COVID-19. 

 

Behavioral Presentation of COVID-19

This presentation provides information on signs of COVID-19 to look for in individuals who have limited expressive language. 

 

Physical Health Resource Collection

This resource collection includes information and tips on regulating sleep, seizure disorders, gastrointestinal issues, and obesity-related conditions.

 

Office of Developmental Programs Coronavirus

This website contains all ODP COVID-19 related information including annoucements, webinars and individual/family resources. 

 

Philadelphia Coordinated Health Care (PCHC) Coronavirus Information

This website provides information for families and individuals on safety, coping strategies, and videos related to COVID-19. 

 

Fatal Four: Understanding the Health Risks of Four Common Conditions

This presentation will discuss aspiration, constipation, dehydration and seizures. These conditions are sometimes referred to as the “Fatal Four” due to the high risk that they pose to individuals with intellectual and developmental disabilities. 

While individuals begin reintegrating into communities, families and caregivers will need to take additional steps in supporting their loved ones. It is important that guidelines are followed closely to keep our loved ones and communities safe. Individuals might need to learn new tasks, skills, and behaviors that follow COVID-19 guidelines to maintain health and wellness. These types of new expectations and routines can cause added stressors in some people’s lives. As family members and caregivers, finding different ways learn new skills can make adjusting to new situations easier for loved ones.

 

The following resources have been created in order to help families and caregivers guide and support their loved ones in learning new tasks related to COVID-19 infection control measures.

 

Desensitization and Learning to Wear a Mask

The purpose of these resources is to provide information on how to help support a loved one to wear a mask so that they can help protect themselves and others from coronavirus. There is also a tool to help loved ones become more comfortable with new tasks in relation to coronavirus guidelines.

 

Teaching New Skills

This collection of resources provide information on best practices for teaching new skills, how to break skills down into smaller parts to make them easier to teach, and other important tips and information on helping individuals learn new skills.

 

Adjusting to New Situations

Change is part of everyday life. The ability to change is central to our growth as individuals. For people with autism/ID, who often rely on predictability and routine to feel calm and safe, change can affect them differently. Adjusting to new situations may be met with anxiety, fear, or resistance. Fortunately, there are strategies you can use to ease adjustment to new situations.

 

Wearing a Mask Social Story

This resource provides a visual guide for individuals with autism/ID about wearing a mask to avoid spreading germs. The resource includes why it’s important to wear a mask, as well as information about how to safely wear and remove masks.

 

Coping with Coronavirus

COVID-19 has changed many aspects of everyday life. Given the rapid nature of the virus’ spread, it’s a good idea to plan ahead. This resource will offer some tips to help individuals and families prepare.

 

Social Distancing Social Story

This resource provides a visual guide for individuals with autism/ID about the importance of social distancing and what it means.

 

Hand Washing Social Story

This resource provides a visual guide for individuals with autism/ID about washing hands.

The changes that have happened as a result of COVID-19 have been stressful for everyone. Changes in schedules and routines, activities and events being cancelled, lack of access to services and supports, and limited contact with friends and family can be difficult to manage. Additionally, some individuals may have experienced the loss of friend, family, or support staff as a result of COVID-19. For individuals with autism and/or intellectual disabilities, it may be difficult to understand these changes, and why their lives are so different right now.

These changes and additional stressors can have major impacts on mental health. Add in reduced services and supports, including access to behavioral supports and therapy services, and some individuals may be experiencing new or worsened mental and behavioral health symptoms.

 

The following resources provide coping strategies, ways to manage grief and trauma, signs of common mental health conditions and suggestions for managing them, as well as relaxation techniques.

 

How to Support Individuals Process Their Feelings
This resource provides information on how to support individuals to understand and manage difficult emotions they may be having.

 

Be Well, Think Well
This collection of resources provides information on anxiety and depression. Resources include an overview of anxiety and depression, recognizing signs, ways to support individuals, and treatment options. Included in this collection are relaxation techniques.

 

How to Create a Coping Zone
This tool provides strategies for families to manage stress during the COVID-19 crisis.

 

Mindful About Meltdowns
This resource provides information on recognizing meltdowns, tips for how to avoid them and ways to respond.

 

Crisis Intervention and De-Escalation
This resource provides information on how to help an individual who may be experiencing a crisis and ways to deescalate the situation. 

 

Get SAFE and be SOUND
This resource provides information for parents who may be experiencing stress and ways to manage that stress to create a calm environment at home.

 

Supporting Safe Behavior
This resource provides information on how to support individuals who may engage in challenging behavior and ways to help keep everyone safe.

 

Trauma and Coping
This resource provides information on understanding what trauma is, identifying triggers, and strategies to support individuals who may have experienced trauma.

 

What is Trauma
This social story provides a visual explanation of what trauma is, and what someone may feel if they have experienced trauma. This resource can be used to help individuals understand and process their feelings.

As a result of statewide “Stay at Home” orders, there have been major changes in everyone’s daily activities. Schools, daycares, businesses, churches, and stores have been closed. Leaving people without their usual daily structure and routines. While most people have adapted to these changes, individuals with autism and/or intellectual disabilities may have a harder time adapting to new routines. 

 

As communities begin to reopen, more changes will arise. The following resources provide tips and suggestions on how to help individuals manage these changes, as well as tools to help them start to develop new routines. 

 

Adjusting to New Situations

This resource provides information on how to help individuals adjust to changes and new situations.

 

Social Story Resource Collection

Social stories can be a helpful took for individuals to prepare for and understand new or different situations. This collection provides information on how to develop social stories. 

 

Supporting New Habits

This resource provides information on how to help teach new skills and support new habits. 

 

Visual Schedule Resources

This collection of resources includes information about visual schedules and how they can be used to support individuals.

 

Establish a New Routine

This resource provides information on how to be flexible and help individuals develop new routines. 

Many services and supports were disrupted as a result of COVID-19. In home supports were stopped to help prevent the spread of the disease. For some individuals, services were able to start again through telehealth, while others may have had no access to any services during this time. For some individuals, they may have new staff working with them that they haven’t had a chance to meet in person yet.

 

Other families may have used these changes as an opportunity to develop natural supports within their communities in order to support their loved ones.

 

Service providers will begin to figure out how to safely provide in-person supports, and families and caregivers will need to carefully consider an individuals support needs. The following resources provide information on using vision boards to explore community supports, how to engage individuals through telehealth, and maintaining connections in the community.

 

Using Vision Boards to Find Community Supports

This resource provides information on using vision boards to find supports within a community such as meet-up groups and activities.

 

Telehealth

This resource provides information about changes to the rules for telehealth during the COVID-19 pandemic.

 

Supporting Engagement at Home

This resource provides suggestions to maintain or increase your loved one’s engagement in their community and household, while staying home. It includes tips on how to have successful telehealth appointments, meeting new staff virtually, and maintaining connections in the community.