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.
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.
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. |
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). |
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”. |
Understanding |
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 |
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. |
Activity:  |
Review the following resources that will assist with understanding the key elements of developing an effective communication plan. For Early Intervention- For school age children– see several examples of communication plans from various states. |
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. |
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. 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. |
Activity: |
Practice creating a Parent Input form after reviewing the following example. |
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. |
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: |
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. |
Activity: |
Read this story from a Parent Advocate sharing information about effective advocacy strategies. |
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). |
Financial assistance, insurance, government funding, entitlements and not-for-profit or voluntary sector supplements.
| TOPIC | FAMILY SUPPORT ACTIVITIES |
Insurance |
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. |
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 |
Activity: |
Review the following list of State Insurance Mandates for Hearing Aids from the American Speech-Language-Hearing Association (ASHA). |
Managing |
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 |
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. |
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. |
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. |
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. |
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. |
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. |
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. |
Activity: |
Read the following information ‘What you Need to Know Before Your Child’s Third Birthday: Early Childhood Transition Guidebook from the Pacer Center. |
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 |
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. 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: |
Review the following CDC resources for Parents when making decisions about Communication and Language for the child. |
Activity: |
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: |
Use the options and considerations listed on this webpage to better understand communication opportunities and determine which will meet the child’s needs. |
| 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/ |
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. |
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: |
Learn more about communication and language development for a child who is D/HH. |
Activity: |
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 |
Activity: |
Connect with a family support organization to learn from other families how they embed language learning into the family routine. |
| 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. |
Activity: |
Use these online resources for knowledge and confidence in troubleshooting the child’s hearing technology. |
