Talking it Through
Communication and understanding are essential to effective and responsive health care. Family physicians can incorporate these tips and information into their practice to ensure individuals with developmental disabilities can access the care they require as they age.
Like all of us, people with developmental disabilities are nurtured throughout their lives by human relationships. Their relationship with a family physician provides an essential foundation for optimal health care. Their relationships with their families and others in their support networks require the respectful consideration of the family physician when providing health care. These supporters can provide clinically relevant information and be excellent resources to family physicians1.
To ensure individuals with developmental disabilities can access the care they require and stay healthy as they age, improved understanding and communication between patients, families, paid caregivers, and family physicians are essential.
Common communication challenges include:
- Many people with developmental disabilities have some difficulty understanding more complex spoken language or abstract concepts.
- Some people are non-verbal with no commonly understood intentional communication.
- Others have a small number of single words or single manual signs in specified situations or augmentative communication systems (e.g., pictures, assistive devices).
- A smaller proportion of individuals with developmental disabilities will have little or limited verbal communication.
- The majority of people with developmental disabilities have a relatively mild form of communication challenges. These people are likely able to express themselves verbally, speaking in sentences, and often appear to comprehend more than they actually do.
- Though they may have communication challenges, people with developmental disabilities do have the ability to learn new information and skills. Varied approaches in communication, such as more repetition of information and more practice of new skills than the general population may be required for a patient with developmental disabilities to acquire new learning.
It is important for family physicians, families, and caregivers to be aware of an individual’s communication needs and requirements, and, where possible, develop plans or strategies to support patient-centred communication. Flexible and timely service responses and proactive, age‐appropriate planning are needed to ensure that people do not end up in crisis situations.
Caregivers and family members who help manage their loved one’s health care report challenges in communicating with family physicians, including:
- Experiencing frustration with the limited awareness and knowledge of developmental disabilities that health professionals and family physicians often have as a result of infrequent opportunities for them to either treat or learn about individuals with developmental disabilities.
- Encountering difficulties communicating with family physicians when providing diagnostic information, expressing concerns, or making suggestions.
- Feeling that they have had to educate first themselves, and then their family physician about developmental disabilities.
As a result, interactions between families and physicians can become strained2.
A sense of safety, emotional connection, and belonging become increasingly important as people age, and their families and friends reach the end of their lives. Supporting existing relationships among extended families and paid caregivers, and expanding personal support networks are both critical to ensuring that individuals have people in their lives who are genuinely interested and respect them and who can safeguard their well-being as they get older. Family physicians can support and enable these vital relationships through practice that empowers both the individual and the support network.
The Roles of Families and Paid Caregivers
Many individuals with developmental disabilities are cared for and supported by their family, who also play a significant role in their health care. Some individuals have paid caregivers who will support and accompany them to medical appointments. The individual may want family members to advocate for their needs and to be involved in health care decision-making. For this reason, it is important that family members are aware of and comfortable with the role they play in the health and safety of the individual, and that this role is communicated to the care team. Neither family members nor caregivers can provide consent on behalf of an individual without a formal legal agreement in place.
Families and extended families need to be supported in their long‐term roles as caregivers, and key emotional and financial supporters of their family members, as they all age. Their legitimate concerns, worries, and needs deserve to be recognized and addressed. In order to have peace‐of‐mind, families need to have trust and faith that their loved ones will be safe and well‐supported after they are no longer able to care for them or they themselves pass away.
Paid caregivers often support individuals with developmental disabilities to access health care or to visit the doctor. The paid caregiver is expected to know what the individual’s current medical issues are and to share this information as needed with members of the individual’s care team – taking into consideration the individual’s health and safety, as well as their right to privacy and self-determination.
The caregiver should have permission to act as the individual’s advocate and share their confidential information. However, paid caregivers cannot act as temporary substitute decision makers. The caregiver should have a written, up-to-date overview of the individual’s health and medical information.
When individuals have complex health care and support needs, they should have a formalized health care plan. This plan will outline the tasks and responsibilities of the paid caregiver as recommended by the involved health care professional(s). This will likely include following a mutually agreed upon communication and monitoring plan.
Supported Decision-Making and Personal Planning
Like all of us, individuals with developmental disabilities have basic human rights and are entitled to make decisions about their own lives including those related to health care. Sometimes an individual may want or need help to consider available information and options before making a decision. This support can be provided informally by either family members or paid caregivers. There are several different options available to formalize this supported decision making for now and for the future – see the Nidus Website for more information and to learn about Representation Agreements.
Here are a number of tips that can help improve communication3:
- It will generally take more time to communicate, do not rush the process.
- An assessment of language skills helps to choose the level of language to use. Talking with someone with a mild developmental disability is very different than talking with a person with a moderate or severe developmental disability.
- Many people with developmental disabilities have stronger receptive (understanding) communication skills than expressive skills. Assume that the person with developmental disabilities can understand more than he/she can communicate.
- Conversely, the person’s expressive speech may sometimes give an impression of better comprehension than is actually the case, so check that the person understands.
- A person with communication challenges might rely upon a supporter or family member to provide relevant history. Make sure the individual has agreed to the third-party providing information.
- People with developmental disabilities have a variable, and sometimes limited, ability to interpret their internal cues (e.g., need to urinate, anxiety). They may not be able to give you an accurate picture of their feelings and symptoms. Involving caregivers who know the person well may help you to better understand his/her subjective experiences. However, continue to focus your communication efforts on the person rather than his/her caregiver.
- If you are in a busy area with many distractions, consider moving to a quieter location to minimize environmental distraction.
- Speak directly with the person.
- Use the same tone and manner you would when speaking with any adult.
- Ask simple introductory questions (e.g., name, reason for visit).
- Speak directly to the person with developmental disabilities, not to his/her caregiver(s).
- Ask the person: “Do you want your support worker to stay here for this visit?”
- Explain at the outset the purpose and process of the meeting in simple terms.
- Determine how the individual communicates by asking for tips and strategies. How do they say yes and no? Should I write things down? Do they use a communication device?
- If the person uses a communication technique or device, involve a caregiver who is familiar with it.
- Be extra mindful of your non-verbal and body language.
- Be aware that many people with developmental disabilities have experiences of trauma – they could be very afraid of the hospital, so extra sensitivity when discussing next steps can help.
- Encourage the use of “comforters” (e.g., favourite item the person likes to carry, or a preference for standing and pacing rather than sitting).
- Respect individual differences and preferences in communication (e.g., some people with autism spectrum disorders [ASD] prefer to avoid eye contact).
- Use concrete language.
- Be mindful of your language choice to ensure the person is comfortable.
- Use short, simple sentences.
- Use concrete as opposed to abstract language, for example:
“Show me”; “Tell me”; “Do this” (with gesture); “Now.” “Come with me”; “I’m going to…”
- Use “Put your coat on” instead of “get ready.”
- Use “Are you upset? Are you sad? Are you happy?” instead of “What are you feeling?”
- The concept of time is abstract and may be difficult to comprehend. Use examples from daily and familiar routines (e.g., breakfast, lunch, dinner, bedtime).
- If the family member or caregiver is involved in the conversation, ask or test whether the individual wants you to refer to him or her in the third person (e.g., he, she, or name) rather than the second person (e.g., you).
- Take time to ensure you have fully understood what the individual is trying to convey.
- Support the individual to provide the information you need.
- Let the person know when you have understood.
- Tell him or her when you do not understand, and ask them to repeat or rephrase.
- Be sensitive to cues and tone of voice.
- It may be difficult to read facial expressions or body language because of differences in muscle tone. You may need to check/validate your perceptions.
- Communication and cognitive challenges can be a barrier to a person recognizing, understanding and reporting their medical issues.
- Support the individual/caregiver to compare current presentation to baseline, and assess factors that may be contributing to change. A person’s ‘behaviours’ can sometimes tell us what’s going on with them (Pain? Unmet need? Sensory loss? Avoidance?).
- Be aware that the visit will likely take more time than usual and that several consultations may be required to complete a full assessment.
- Explain what will happen before you begin.
- Tell and show what you are going to do and why.
- Speak slowly. Avoid raising your voice, unless requested to do so.
- Pause frequently, so as not to overload the person with words.
- Give the person with developmental disabilities enough time to understand what you have said and to respond.
- Rephrase and repeat questions, if necessary, or write them out.
- To maximize comprehension ask the person to rephrase in their own words what you’ve told them.
- Use visual aids.
- Act or demonstrate.
- People with poor language understanding rely on routines and cues from their environments to understand or anticipate what will happen.
- Individual communication needs and preferences will vary – ask for strategies and tips – what do they find helpful? Should I write things down? Use technology?
- Use pictures or simple diagrams and gestures (e.g., basic sign language).
- Some people with developmental disabilities may express themselves only in writing.
- Use picture language when explaining; find signs in their communication book: “It looks like …” (point to objects familiar to the person with developmental disabilities).
- Point to a body part or mime a procedure (e.g., checking ears).
1. Sullivan et. al. (2006). Consensus guidelines for primary health care of adults with developmental disabilities. Canadian Family Physician. 52(11):1410-8.
2. Ouellette-Kuntz et. al. (2005). Addressing Health Disparities Through Promoting Equity for Individuals with Intellectual Disability. Canadian Journal of Public Health. 96 Suppl 2:S8-22.
4. Surrey Place Centre. (2011). Communicating Effectively with People with Developmental Disabilities (DD).