Conceptual Framework graphic

Construct 2

Knowledge

Construct 2A: Advocacy

Component 1: Legal Rights: are the laws, regulations, legislation and government policies related to human rights, child’s rights, and special education laws.

Component 2: Representation: refers to peer advocate, parental consultant, and advisor at the community, regional and national levels.

Component 3: Financial Resources: financial assistance, insurance, government funding, entitlements and not-for-profit or voluntary sector supplements. 

Construct 2B: Systems Navigation & Transitions

Component 1: Information: refers to providing accurate, well-balanced and comprehensive information regarding technological and research advancements, and educational, communication and assistive device options.

Component 2: Skills: refers to skill-based instruction and support, such as sign language and device-appropriate technological skills, as a supplement to specialized services and support.

Family Learning Outcomes - In this construct parents/caregivers will: 

  1. understand the impact of hearing loss/difference on their child’s development.
  2. have an increased understanding of the different language/communication options for children who are Deaf or Hard of Hearing.
  3. understand their role in advocating for their child’s needs.
  4. have more knowledge of information and resources that will support their child/family.
  5. be able to name information learned from their family support provider.

Table of Contents

LEGAL RIGHTS Laws Understanding Plans Family Participation REPRESENTATION Advocate Role Peer Support Locating Support FINANCIAL RESOURCES Insurance Coverage Managing Healthcare Expenses SPECIALISTS Medical Home Collaboration Specialized Providers SERVICES Parent Role Service Options Transitions INFORMATION Appropriate Information Communication Options Assistive Technology SKILLS Provider Experience Engaging in Language Technology Skills ADVOCACY SYSTEM NAVIGATION & TRANSITIONS EDUCATION

Construct 2A:

Advocacy

Component 1 - Legal Rights

Legal rights are the laws, regulations, legislation, and government policies related to human rights, child’s rights, and special education laws.

TOPIC

FAMILY SUPPORT ACTIVITIES

Laws

Understanding the laws that protect a child’s legal rights will help a family properly advocate.

Activity:

Read information on the Early Childhood Technical Assistance Center (ECTAC) webpage that assists families in understanding; what is Part C, what is Part B, IFSPs, and IEPs.
https://ectacenter.org/idea.asp

Activity:

Review these Parent Center Hub resources written directly to parents answering questions about their parental rights and special education services. www.parentcenterhub.org/ Also in Spanish

Activity:

Review these two resources specific to students who are D/HH. “Hands & Voices Educational Advocacy Guidebook” (English and Spanish) and “Optimizing Outcomes for Students who are Deaf or Hard of Hearing - Educational Services Guidelines from the National Association of State Directors of Special Education” (NASDSE).

H&V Educational Advocacy Guidebook

Optimizing Outcomes for Students

Activity:

View the following webpages which provide information about the Americans With Disabilities Act (ADA). On the topics of: “Introduction to the ADA” and “Effective Communication”.

Go to - "Introduction to the ADA"

Go to - "Effective Communication"

Understanding
Plans

Identifying key pieces of a child’s early intervention or educational plan such as length, due date for revision, needs, goals, services, and providers enables a family to fully understand and engage in the plan.

Activity:

Learn what families can expect in Early Intervention and how to know if the child is receiving the right services by reading the following resource.

Parents Guide to Deaf and Hard of Hearing Early Intervention Recommendations" - PDF

Also in Spanish - Also in Farsi

Activity:

Watch the following recorded webinar: “Early Intervention: Advocacy in the Early Years” to learn more about what to expect in Early Intervention for children who are D/HH. https://vimeo.com/884124020

Activity:

Read chapter 5 in the NASDSE Guidelines to learn more about best practices in determining goals, services, and placement for students who are D/HH.
Link to NASDSE PDF

Activity:

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Review the following resources that will assist with understanding the key elements of developing an effective communication plan.

For Early Intervention-
Making a Plan for Your Child (CDC) PDF

For school age children– see several examples of communication plans from various states.
Visit the ASTra page on the H&V site

Family Participation

Understanding and preparing input for a child’s Early Intervention/School meeting allows a family to fully engage and create a positive impact on the child’s learning.

Activity:

Read the following article at hv-library.com from a parent sharing a story about her experience into advocacy.

Getting to Yes: Confessions of a Reluctant Advocate

Activity:

Review the Hands & Voices IEP Meeting Planner (for school age) or the CDC “Making a Plan for Your Child” (for early intervention). These resources assist with developing parent/ caregiver input prior to an early intervention or school meeting.

IEP Meeting Planner/

Making a Plan for Your Child (CDC) 

Additionally, the safety of all children must be considered. Review the following O.U.R. Project Safety Attachment Plan for IFSP and IEP teams to consider the child’s safety within the home/ academic setting.

Safety Attachment Plan Template_v1-1.pdf

Activity:

Practice creating a Parent Input form after reviewing the following example.
ASTra Parent Student Input Statement.pdf

Component 2 - Representation

Refers to peer advocate, parental consultant, and advisor at the community, regional and national levels.

TOPIC FAMILY SUPPORT ACTIVITIES
Advocate Role Understanding the role of a peer advocate, consultant or advisor can help a family know what supports are available for current or future needs.

Activity:

Watch the following webinar from a Hands & Voices Advocate discussing how parents/caregivers can learn to be a child’s best advocate.

Advocacy101 Video

Activity:

Review the Center for Appropriate Dispute Resolution in Special Education (CADRE) guide to assist in understanding the role of an Educational Advocate.

From cadreworks.org:
educational advocates guide
Also in Spanish

Peer Support

Hearing the experiences of other families can help a family become aware of when they may need additional support from a peer advocate, consultant, advisor, etc.

Activity:

Learn from articles written by other parents about the Early Intervention period.
H&V hv-library.com/early-intervention/

Activity:

Read this story from a Parent Advocate sharing information about effective advocacy strategies.
RAdvocacy and the New Vocabulary of Power

Locating Support

Knowing where to find advocacy support or who can answer educational questions a parent/caregiver may have during their journey is important.

Activity:

Review the Hands & Voices Advocacy, Support, and Training (ASTra) webpage of advocacy resources. Here you will find an Educational Advocacy Request Form to access Hands & Voices Deaf and Hard of Hearing advocacy support.

Go to web page - Also available in Spanish

Activity:

Learn about the Parent Training and Information Center (PTI) and Community Parent Resource Center (CPRC) where you are located. (These are non-disability specific centers).
www.parentcenterhub.org/find-your-center/

Component 3 - Financial Resources

Financial assistance, insurance, government funding, entitlements and not-for-profit or voluntary sector supplements.

TOPIC FAMILY SUPPORT ACTIVITIES

Insurance
Coverage

Knowing what is included in an insurance policy and who can help when families have questions regarding coverage for a D/HH child is important.

Activity:

Explore the EHDI-PALS website. Here you can locate Pediatric Audiologists/Facilities searched by state/territory that include information about what insurance is accepted.
EHDI Pals Smart Tool page - Available in Spanish

Activity:

View the resources listed within this article from Verywell Health to learn about potential financial aid assistance for hearing technology. VeryWell Health web site

Activity:

Learn how to appeal a decision made by an insurance company if you disagree.

HealthCare.gov
Also in Spanish

Activity:

Review the following list of State Insurance Mandates for Hearing Aids from the American Speech-Language-Hearing Association (ASHA).

Link to ASHA.org

Managing
Healthcare
Expenses

Being aware of state specific Insurance Programs, Health Savings Accounts, Care Credit and other available resources for managing healthcare related expenses can reduce the financial stress for families.

Activity:

Review the following resources with information about managing healthcare related expenses.

Activity:

Find resources for childcare, health and social services, financial assistance, support for children with special needs, and more from various states/territories. ChildCareAware.org - State by State Resources Also in Spanish

Activity:

Learn about Supplemental Security Income (SSI) for children with disabilities and to review eligibility requirements. https://www.ssa.gov/pubs/EN-05-10026.pdf

Also in Spanish, Arabic, Chinese, Farsi, French, Greek, Italian, Korean, Polish, Portuguese, Russian and Vietnamese

Construct 2B:

Systems Navigation & Transitions

Component 1 - Specialists

Refers to the learning parent’s knowledge during system navigation and transitions to coordinate care with specialists, collaborate with stakeholders, provide a roadmap of care, and facilitate understanding of the role of the specialist(s).

TOPIC FAMILY SUPPORT ACTIVITIES
Medical Home Understanding a child’s Medical Home and the specialist’s roles will assist families with knowing who is responsible for the various aspects of the child’s care. Medical Home is not a place, but the way care is provided to a child and their family.

Activity:

Learn from the AAP National Center for Medical Home Implementation about what is a medical home.
YOUR CHILD’S “MEDICAL HOME”: WHAT YOU NEED TO KNOW
- PDF

What Is a Patient-Centered Medical Home (PCMH)? - PDF

Activity:

Read about the roles of providers and how they support a family with a child who is D/HH. https://www.babyhearing.org/ | Also in Spanish

Activity:

Review this summary of recommendations from the Joint Committee on Infant Hearing (JCIH) on the medical home and the providers that may be needed for follow up care.

Medical Home - Pdf

Collaboration

Working with the appropriate professionals during transition periods for a child is important in understanding the possible placement options and what may fit the child’s needs.

Activity:

Review Phonak’s Guide for Parent-Professional Partnerships in the Hearing Healthcare Setting which provides information about the importance of a child’s Hearing Care Provider (HCP) and the family working together in a mutually respectful relationship.

Guide for Parent-Professional Partnerships in the Hearing Healthcare Setting - Pdf

Activity:

Read the Transition to Preschool article to understand the transition from Early Intervention to school age (Part B) services and which providers a family will collaborate with during the process.

Transition-to-Preschool | Also in Spanish

Activity:

Use this babyhearing.org webpage for school age children to understand the differences among the possible placement options and the professionals that serve within those settings. School Placements  | Also in Spanish

Specialized Providers

Working with providers who have D/HH expertise is vital to the outcomes of children who are D/HH.

Activity:

Read this easy-to-understand guide for families on the 12 Joint Committee on Infant Hearing (JCIH) goals for information about Early Intervention best practices and tips on how to advocate for appropriate services.

A PARENT’S GUIDE TO DEAF AND HARD OF HEARING EARLY INTERVENTION RECOMMENDATIONS - PDF Also in Spanish

Activity:

Review the Family Guide to Audiology and Telehealth. This Guide provides information about the significant role of Pediatric Audiologists, the importance of working together as a team with families, and how they can help with accessing services and resources a family may need.

Download Family Guide - PDF

Component 2 - Services

Refers to community resources, health care, school, legal and regional services.

TOPIC FAMILY SUPPORT ACTIVITIES
Parent/
Caregiver Role
Being comfortable and confident when advocating for a child’s services helps families create better outcomes for their children.

Activity:

View “5 Reasons to saying Yes to Assessment” as a starting place for advocating for appropriate services.

Also in Spanish

Activity:

Review resources from the CDC that include PDFs of “Questions to Ask Your Child’s …” (these include Early Interventionists, ENT, Audiologist, SLP, Genetics Team, Medical Professional).

https://www.cdc.gov/ | (Some also in Spanish)

Activity:

Watch this short video of a Parent Advocate sharing tips about becoming their child’s advocate.

https://vimeo.com/328851217

Activity:

Learn how to prepare to be an effective part of the team for a child who is D/HH. https://www.babyhearing.org/

Service Options

Finding appropriate service options and understanding the importance of timely access to services maximizes the outcomes for children who are D/HH.

Activity:

Review the following infographic that shares the importance of getting enrolled in Early Intervention as soon as a child is identified as Deaf or Hard of Hearing.
8 Reasons to say YES to Early Intervention
Also in Spanish

Activity:

Read chapters 5 & 6 in the NASDSE Guidelines Optimizing Outcomes for students who are Deaf or Hard of Hearing to learn more about possible educational, social, assistive technology, and support services that are available to families in the education setting.

http://www.nasdse.org/ - Pdf

Transitions Gathering resources to understand services during times of transition provides a family with the knowledge to navigate the system effectively.

Activity:

Review the following checklist intended to assist parents when considering preschool or kindergarten placement options for their deaf or hard of hearing child.

Parent Checklist – preschool

Activity:

Read the following information ‘What you Need to Know Before Your Child’s Third Birthday: Early Childhood Transition Guidebook from the Pacer Center.

Early Childhood Transition Guidebook

Construct 2C:

Education

Component 1 - Information

Refers to the learning parent’s knowledge during system navigation and transitions to coordinate care with specialists, collaborate with stakeholders, provide a roadmap of care, and facilitate understanding of the role of the specialist(s).

TOPIC FAMILY SUPPORT ACTIVITIES
Appropriate
Information
Receiving well-balanced and comprehensive information from providers will help a family be aware of the options with an understanding that decisions may change over time and with experiences.

Activity:

Review the “Parent’s Guide to D/HH Early Intervention Recommendations” to better un- derstand best practices for early intervention and how to access appropriate services for children who are D/HH.

A PARENT’S GUIDE TO DEAF & HARD OF HEARING EARLY INTERVENTION RECOMMENDATIONS - Pdf

Also in Spanish

Also in Farsi

Activity:

Review the EHDI-PALS website family resources. There are resources that assist families with understanding more about testing for a hearing difference in children, types of hearing technology, and much more.
Family Resources

Also in Spanish - (The EHDI- Pals site is Spanish enabled on the toolbar)

Activity:

Watch the Hands & Voices video, which serves as a model for unbiased support to families and helps differentiate between a Personal Belief System and Bias.

Communication
Options

Locating and exploring unbiased information on communication options/ opportunities helps a family fully understand and feel confident in their decision.

Activity:

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Review the following CDC resources for Parents when making decisions about Communication and Language for the child.

Decision Guide to Communication Choices - pdf

Also in Spanish

Activity:

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Watch the video from Maine Educational Center for the Deaf and Hard of Hearing that in- cludes information about the different language and communication opportunities for a child who is Deaf or Hard of Hearing.

https://www.youtube.com/ In English and ASL

Activity:

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Use the options and considerations listed on this webpage to better understand communication opportunities and determine which will meet the child’s needs.
Choosing Communication Approaches
| Also in Spanish

Assistive
Technology
Learning about assistive technology that could increase a child’s access to information.

Activity:

Learn about various types of assistive technology and when they may be needed. https://www.asha.org/

Activity:

Read about different types of assistive technology that children may need as they grow, to support independence. https://www.babyhearing.org/

Component 2 - Skills

Refers to skill-based instruction and support, such as sign language and device-appropriate technological skills, as a supplement to specialized services and support.

TOPIC FAMILY SUPPORT ACTIVITIES
Provider Experience It’s important for a family to identify providers who are appropriately educated, trained, and have the experience and skills to work effectively with a child who is D/ HH.

Activity:

Learn about the roles and duties of the providers families may come in contact with during Early Intervention by reading this parent education page from Illinois Sound Beginnings.

Parent Education Pages

Activity:

Review the EHDI-Pals searchable national directory to find appropriately skilled providers for pediatric audiology services.

https://ehdi-pals.org/ - Also in Spanish (The EHDI- Pals site is Spanish enabled on the toolbar)

Engaging in Language Families serve as the child’s first language models so it’s important to determine what supports and resources may be needed to further develop the parent/caregiver skills in supporting their child’s language development.

Activity:

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Learn more about communication and language development for a child who is D/HH.

Activity:

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Review the Language, Literacy, and Social-Emotional Tipsheets and watch the accompanying videos to assist in developing fun language learning activities. https://handsandvoices.org/ Also in Spanish

Use the Family Activity Plan for Language, Literacy, and Social Emotional Skills to create fun, playful ways to include language learning into a child’s day. https://handsandvoices.org/ - Pdf

Also in Spanish

Activity:

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Connect with a family support organization to learn from other families how they embed language learning into the family routine.

Find a Family-Based Organization.

Technology Skills Finding resources or others who can help a family understand their child’s audiogram and operation/trouble shooting of the hearing device(s) the child uses will help the family feel more prepared and help the child have access to properly working devices.

Activity:

Use the EHDI-PALS website to understand diagnostic hearing tests, the Audiogram and what additional questions a family can ask the child’s Audiologist.

Understanding Diagnostic Hearing Tests | Also in Spanish

Activity:

Visit the John Tracy Center webpage for tips to keep on hearing devices (Cochlear Implants, Hearing Aids, etc.), terms commonly used, different types of hearing conditions (conductive, auditory neuropathy, single-sided, etc.) and much more.

Audiology, Hearing Loss, and Devices | Also in Spanish

Activity:

Use these online resources for knowledge and confidence in troubleshooting the child’s hearing technology.

How Do I Troubleshoot My Cochlear Implant?

TROUBLESHOOTING for Hearing Aids | Also in Spanish

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This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number 5UJ1MC30748-07-00 for Family Leadership In Language And Learning for $1,800,00.00 This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.