Talking it Through

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.

Families

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

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.