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WELCOME!

This training module equips healthcare professionals with strategies to foster trust and confidence among parents with Intellectual and Developmental Disabilities (IDD).

Through a focus on effective communication techniques, we’ll look at building rapport through active listening, using plain language to ensure understanding, and addressing breakdowns in communication.

Additionally, participants will gain insights into fostering a supportive environment for families during medical visits and how to help them follow through on treatment plans.

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Learning Objectives

At the conclusion of this module, healthcare professionals will:

Understand how rapport impacts communication
Discover strategies that can be used to build trust and strengthen self confidence among parents.
Learn effective communication strategies.
Identify strategies that work to help parents with IDD follow through with treatment plans.
Discover strategies that can be used to support families through visits.

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Understanding the Impact of Rapport on Communication

Establishing a relationship and building rapport improves outcomes in healthcare and support services for parents with intellectual and developmental disabilities (IDD).

Building rapport is associated with improved outcomes in healthcare and support services. When parents with IDD feel valued, heard, and respected, they are more likely to adhere to recommendations, follow through with treatment plans, and actively engage in interventions that promote the well-being of their children.

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Build Trust & Self-Confidence

At one time or another, ALL parents feel they are not good enough. Parents with IDD may have even been told this more than once.

Have you ever been told that you are not good at something? What did that do to your self-esteem? Would it have been easier coming from someone you had rapport with?

In our recent survey of parents with IDD accessing healthcare, over 50% of parents noted a previous bad experience as the largest barrier to accessing future care. What happens at visits is important to current and future care!

At one time or another, ALL parents feel they are not good enough. A parent with IDD may have even been told this more than once.

How can we help build trust and self-confidence in parents with IDD? A strength-based perspective, together with a person-centered approach, can lay the groundwork.

The strengths-based perspective emphasizes a joint partnership between the parent(s) with a developmental/intellectual disability, their natural supports, and the professionals working with them.

A person-centered approach that regards parents as equal partners in the planning, development, and monitoring of services and supports can build their trust and self-confidence.

To build their confidence, and gain their trust, we need to recognize them as experts in their own life and family, and point out their strengths.

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Understanding the Impact of Rapport on Communication

By actively listening and avoiding judgment, professionals can create a safe space that empowers parents, ultimately strengthening their self-confidence.

This shift towards a strengths-based approach not only enhances communication but also contributes to the establishment of a trusting relationship between healthcare providers and parents.

Recognizing the profound impact of rapport on communication is the first step. Understanding that trust forms the foundation for meaningful interactions, healthcare professionals can tailor their approach to acknowledge the unique strengths of parents with IDD.

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Strategies to Build Trust and Establish Positive Rapport

Make Time and Take Time: parents with IDD will need time to talk and process.
Use Active Listening Techniques: really hear what they say and help them address their questions. Don’t brush them off or only focus on your agenda.

Engage in Non-judgmental Communication: let them know they can be open without fear of judgement.
Recognize them as the expert on their life and their child’s life – point out their successes!
Collaboratively Set Goals – parents should be part of the plan.

How can we help build trust and self-confidence in parents with IDD?

As we heard from parents in their survey responses, providers can do a few simple things to build trust and establish rapport:

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Strategies to Build Trust and Establish Positive Rapport

Parents with IDD may be more open to sharing information, asking questions, and actively participating in discussions when they feel a sense of trust and security in their interactions with professionals.

Are you more open to speaking to someone you have a valued relationship with? How do you feel about sharing with someone who has not valued or listened to you in the past?

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Effective Communication Strategies

Having effective communication strategies when working with parents with IDD is essential in improving interactions and experiences.

In a 2023 survey of parents with IDD and their experiences accessing healthcare, the data underscores the importance of clear and effective communication in healthcare settings. Addressing communication barriers and improving accessibility can enhance the overall healthcare experience and outcomes for parents with IDD.

Utilizing plain language, avoiding jargon, and incorporating visual aids and alternative communication methods are pivotal techniques.

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Communication Techniques

Plain Language and Avoiding Jargon

Definition: Plain language involves using simple, clear, and concise language that is easily understood by a broad audience. This technique is crucial when communicating with parents with IDD as it helps avoid confusion caused by complex medical terminology.

Examples: Instead of saying "hypertension," healthcare providers might use plain language like "high blood pressure." Similarly, rather than using technical terms, they would explain medical information in a straightforward and accessible manner. This applies to written materials as well.

Check out this app created by Phoenix Children’s Hospital to have plain-language medical conversations: https://www.phoenixchildrens.org/child-life-and-therapeutic-arts/simply-sayin-app

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Communication Techniques

Visual Aids and Alternative Communication Methods

Utilizing Visual Aids: Visual aids, such as charts, diagrams, or pictograms, assist in conveying information visually. For parents with IDD, who may benefit from visual learning, these aids enhance understanding and reinforce key concepts.

Alternative Communication Methods: Some parents with IDD may use alternative communication methods like communication boards or augmentative and alternative communication (AAC) devices. These tools support individuals who have difficulty with verbal communication and ensure they can express themselves effectively.

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Communication Techniques

Flexibility in Communication Styles

Recognizing Individual Styles: Flexibility involves recognizing and adapting to the diverse communication styles of parents with IDD. Some may prefer verbal communication, while others may rely on gestures, visuals, or written communication. Understanding and accommodating these preferences contribute to effective communication. It’s okay to ask what they prefer. You can note it in their chart for the next visit, or for other providers.

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Communication Techniques

Active Listening Skills

Components of Active Listening: Active listening involves giving full attention, making eye contact, and using verbal and non-verbal cues to show understanding. For parents with IDD, active listening is crucial for creating a supportive and inclusive communication environment. This may include summarizing information, asking clarifying questions, and reflecting on the emotions expressed by parents. Try not to use leading or close-ended questions. Active listening can encourage parents to express their thoughts and feelings. It also builds trust, showing parent that you care and respect them.

What are some examples of nonverbal cues?

What about verbal cues?

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Communication Strategies

Some other communication strategies to consider:

Simplified Language: Individuals with intellectual disabilities may benefit from healthcare professionals using simplified language, avoiding complex medical jargon, and providing information in a clear and straightforward manner.
Visual Aids: Visual aids such as pictures, diagrams, or easy-to-understand charts can assist in conveying information, making it more accessible for individuals with intellectual disabilities who may have difficulty processing verbal information alone.
Extra Time and Patience: Individuals with intellectual disabilities might need extra time to process information and communicate their needs. Healthcare providers should be patient, allowing for extended appointment times if necessary and creating an environment where the individual feels comfortable expressing themselves.
Consistent Communication Partners: Maintaining consistency in communication partners can help build trust and familiarity for individuals with intellectual disabilities. This continuity can improve the overall communication experience during healthcare interactions.
Alternative Communication Methods: Some individuals with intellectual disabilities may use alternative communication methods, such as visual schedules, communication boards, or augmentative and alternative communication (AAC) devices. Healthcare providers should be open to and knowledgeable about these methods to facilitate effective communication.
Inclusive and Respectful Approach: It is essential for healthcare providers to adopt an inclusive and respectful approach, recognizing the autonomy and decision-making capacity of individuals with intellectual disabilities. Involving them in healthcare discussions and decisions promotes a collaborative and patient-centered care approach.
Interpreter Services: under the ADA, parents with IDD are entitled to interpreter services. This may mean language interpreters, or sign language interpreters. Even if they bring someone to help, it’s best to have a professional interpreter to ensure nothing is lost in communication.

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What does this all look like in reality? How can you support a family at a visit?

We want to think about the following:

Preparing Families for Visits
Creating a Welcoming Environment
Addressing Anxiety and Stress
Collaborating with Support Services
Developing Individualized Care Plans

With these in mind, can you think of a few simple ways you can engage with parents at the initial healthcare visit?

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A few simple ways you can engage with parents at the initial healthcare visit…

Have the office call the family before they come in to ensure they’re ready and see if they have any needs. A reminder robocall won’t get this information. Do they know where they’re going? When to be there? What they need to bring?
Greet the parent with a smile and make eye contact when speaking to them. Be aware of your body language.
Communicate to parent and patient by facing them and calling them by their name. If the parent has a support person with them, you can still address the parent.
If paperwork needs to be completed, give to parent clear and concise directions using plain language. Be prepared to offer help, if needed. Be prepared to give more time and a quiet place to work.
Being specific with the parent about wait times. Give them updates often.

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What does communication look like during a visit?

Consider the following:

Active Listening
Plain Language
Communication styles and needs
Visual aids and alternative communication methods
Respect

Can you think of a few simple ways you can effectively communicate during visits using each of these?

Ask the parent about their child. Listen openly and recap what you hear.

Adjust your method of communication as necessary depending on the parent questions or responses to you. If they don’t seem to understand, try a new way of stating the question.

Avoid leading questions. Avoid things like “I assume s(he) is using at least 30 words?” or “I bet she’s running all by herself!” Those questions don’t leave room for the parent to answer, and they will most likely just say “yes.”

When asking parent questions, leave them open-ended. Do not rush to fill the silence as some people with intellectual and/or developmental disabilities may tell you what they think you want to hear, or simply answer “yes.”

Use simple, direct sentences or supplementary visual forms of communication, such as gestures, diagrams, or demonstrations, if indicated.

Use concrete, specific and plain language. Avoid abstract language and jargon, and when possible, use words that relate to things you both can see.

Avoid using directional terms such as right, left, east, or west. It’s best to point.

Be prepared to repeat the same information more than once in different ways. Ask them to re-cap what you’ve discussed.

Ask them how you can help. Ask them what they need. Ask them “what’s one question you have about what we’ve talked about today?”

Give clear and exact instructions. For example, “The nurse will meet with you and your child at 10:30am” rather than “The nurse meet with you and your family in 15 minutes.”

Avoid giving too many directions at one time, which can be confusing.

Eliminate distractions and minimize background noise if possible.

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What does communication look like during a visit?

Active Listening:

Scenario: During a healthcare visit, a parent with IDD expresses concerns about a new medication for their child.

How can you use active listening to help them?

The healthcare provider actively listens, maintaining eye contact, nodding, and paraphrasing the parent's concerns to ensure understanding. By acknowledging the parent's worries, the healthcare provider can address specific fears and tailor explanations accordingly.

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What does communication look like during a visit?

Communication Styles and Needs:

Scenario: You present the parent a written description of an upcoming medical procedure but they share they prefer to learn through visuals.

How can use alternative communication styles to address their needs?

Recognizing that a parent with IDD responds well to visual cues, the healthcare provider incorporates simple drawings and charts to explain the upcoming medical procedure. They also adjust their communication pace, allowing the parent time to process information and ask questions, thereby respecting the individual's unique communication style and needs.

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What does communication look like during a visit?

Visual Aids and Alternative Communication Methods:

Scenario: A parent with IDD struggles to articulate their symptoms verbally.

How can you use active listening to help them?

The healthcare provider introduces a visual pain scale and a communication board with images to help the parent express their discomfort and identify specific areas of concern. This alternative communication method enhances the parent's ability to actively participate in the discussion and convey relevant information.

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Putting the pieces together to support parents with IDD in adhering to treatment plans.

Parents with IDD are often expected to receive information and put it in to practice the same as parents without IDD. This is where plans fail, often leading parents to be labeled as “non compliant,” simply because they were not given information in way they understood.

Effective communication, characterized by clear language, tailored supports, and inclusive strategies, enhances understanding and trust for parents with Intellectual and Developmental Disabilities (IDD). This, in turn, fosters active engagement, empowerment, and a sense of collaboration, promoting better adherence to healthcare treatment plans through improved comprehension and shared decision-making.

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Putting the pieces together to support parents with IDD in adhering to treatment plans.

Parents with IDD are often expected to receive information and put it in to practice the same as parents without IDD. This is where plans fail, often leading parents to be labeled as “non compliant,” simply because they were not given information in way they understood.

Effective communication, characterized by clear language, tailored supports, and inclusive strategies, enhances understanding and trust for parents with Intellectual and Developmental Disabilities (IDD). This, in turn, fosters active engagement, empowerment, and a sense of collaboration, promoting better adherence to healthcare treatment plans through improved comprehension and shared decision-making.

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Putting the pieces together to support parents with IDD in adhering to treatment plans.

If you take the time to build rapport, and use communication that works for the parent, you will see improved healthcare outcomes.

Be attuned to how your patient is feeling and be interested in what they have to say – check in with them.
Meet them where they are and offer support without judgement.
Give clear, simple, and exact instructions (no jargon!), in their preferred communication style.
When possible, provide and connect parent to community resources that can assist with treatment plan

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Congratulations!! �You’ve finished the course. �Check out the Additional Resources tab�

Author: Colleen Downes, Cathy Haarstad, and Chelsea Tighe –TASP

Reviewers:

Lindsay Brillhart

Ivanova Smith

Quiana Mayo

Jamie Junior

�

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Additional Resources

The Association for Successful Parenting – supports parents with IDD through education, advocacy, and support. TASP has a blog written by parents about topics pertaining to parents with IDD, and a “Parenting Tips” series written by parents with IDD, for parents with IDD. https://achancetoparent.net/

National Resource Center for Parents with Disabilities conducts research and provides training and technical assistance to improve the lives of parents with disabilities and their families. https://heller.brandeis.edu/parents-with-disabilities/

TASH: International leader in disability advocacy: https://tash.org/

Proud Parents Connecticut offers plain language resources chosen by parents with differing abilities to help parents be the best parents they can be. https://www.proudparents.info/

Self Advocates Becoming Empowered (SABE): https://www.sabeusa.org/

Self-Advocate Resource and Technical Assistance Center (SARTAC): https://www.selfadvocacyinfo.org/

Self-Advocacy Online: Stories From Self-Advocates: http://selfadvocacyonline.org/stories/?fbclid=IwAR0aovFObPYY8SIb1AZgCYEaO1SzpXNs9EBBBEzPI4CNhZ4nzBawAc-nHxE

Center for Parent Information and Resources Resource Library, section on Self-Advocacy: https://www.parentcenterhub.org/resourcelibrary/index/s/s2/

National Council on Disabilities, Rocking the Cradle Report on Parents with Disabilities:

https://www.ncd.gov/publications/2012/Sep272012

The Arc of the United States: https://thearc.org/position-statements/parents-with-intellectual-developmental-disabilities/

(For ID Team: Please put these under the Additional Resources Tab)

The Association for Successful Parenting – supports parents with IDD through education, advocacy, and support. TASP has a blog written by parents about topics pertaining to parents with IDD, and a “Parenting Tips” series written by parents with IDD, for parents with IDD. https://achancetoparent.net/

National Resource Center for Parents with Disabilities conducts research and provides training and technical assistance to improve the lives of parents with disabilities and their families. https://heller.brandeis.edu/parents-with-disabilities/

TASH: International leader in disability advocacy: https://tash.org/

Proud Parents Connecticut offers plain language resources chosen by parents with differing abilities to help parents be the best parents they can be. https://www.proudparents.info/

Self Advocates Becoming Empowered (SABE): https://www.sabeusa.org/

Self-Advocate Resource and Technical Assistance Center (SARTAC): https://www.selfadvocacyinfo.org/

Self-Advocacy Online: Stories From Self-Advocates: http://selfadvocacyonline.org/stories/?fbclid=IwAR0aovFObPYY8SIb1AZgCYEaO1SzpXNs9EBBBEzPI4CNhZ4nzBawAc-nHxE

Center for Parent Information and Resources Resource Library, section on Self-Advocacy: https://www.parentcenterhub.org/resourcelibrary/index/s/s2/

National Council on Disabilities, Rocking the Cradle Report on Parents with Disabilities:

https://www.ncd.gov/publications/2012/Sep272012

The Arc of the United States: https://thearc.org/position-statements/parents-with-intellectual-developmental-disabilities/

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Additional Resources - Organizations

The Association for Successful Parenting – supports parents with IDD through education, advocacy, and support. TASP conducts training for professionals and supports parents with IDD to advocate and share their stories: https://achancetoparent.net/

National Resource Center for Parents with Disabilities conducts research and provides training and technical assistance to improve the lives of parents with disabilities and their families. https://heller.brandeis.edu/parents-with-disabilities/

Proud Parents Connecticut offers plain language resources chosen by parents with differing abilities to help parents be the best parents they can be. https://www.proudparents.info/

Self Advocates Becoming Empowered (SABE): National self-advocacy organization. https://www.sabeusa.org /

Institute for Exceptional Care (IEC) works to make healthcare better and safer for people with intellectual and/or developmental disabilities. https://www.ie-care.org/

The National Center for Disability, Equity, and Intersectionality’s goal is to lead the nation’s charge to identify and reduce life-limiting inequities in healthcare, community living, and justice for people with disabilities. https://thinkequitable.com/

American Academy on Developmental Medicine and Dentistry is a non-profit, membership organization of interdisciplinary health professionals — including primary physicians, medical specialists, dentists, optometrists, nurses and other clinicians — committed to improving the quality of healthcare for people with intellectual & developmental disabilities (IDD).: https://www.aadmd.org/