Did you know over seven million people in the U.S. have an intellectual disability (ID)? Within in this group, about one or two percent of the individuals have what we call profound intellectual and multiple disabilities (PIMD).Today, we’re going to take a closer look at what life is like for this small population of people and the treatment options available for them and their families.
Understanding What it Means to Have PIMD
The term PIMD is used to describe people with severe to profound intellectual disabilities and medical conditions that affect how they learn and develop in important ways. In addition, people with PIMD have other disabilities which can include severe autism, epilepsy, Rett syndrome or another rare disorder.
Since these individuals have complex mental and physical health needs, they may have trouble with vision, hearing and mobility. This makes it difficult for them to communicate and do self-care. For example, people with PIMD may not be able to tell someone when they are in pain and many people with PIMD need help with basic things like eating, washing and getting dressed.
Identifying Potential Causes of PIMD
While it’s not always clear why some people have PIMD, common causes include early trauma before or during birth, chromosome abnormalities, malnutrition or even an illness. The criteria for determining whether or not someone has PIMD are based on an IQ of less than 20 and the amount and types of interventions needed to help the individual in their everyday life.2
Determining the Right Treatment Options
Like everyone else, individuals with PIMD need opportunities to learn and grow. However, this requires high levels of support from a variety of caregivers such as parents, doctors and other professionals. In fact, a child with PIMD and their family may benefit from working with a multi-disciplinary team of trained health professionals. These highly experienced experts can provide a treatment plan that addresses the child’s unique needs and their family’s top priorities.
Getting people around them to understand their needs is a barrier for people with PIMD because all individuals with PIMD have difficulty with communication. Speech-language pathologists and other professionals can teach people with PIMD how to use symbols, gestors or very basic signs like the sign for toilet or technology to communicate their basic needs or let their caregiver know when they are in pain. But it’s not just professionals who can help with communication. People with PIMD often have facial expressions, simple sounds or gestors that are communicative, and their family members often learn how to interpret the communication. For example, a sister learned when her PIMD sibling made a particular arm and hand movement, a gestor, he wanted his favorite toy. This allowed the two siblings to play together in a way that worked for the sibling with PIMD.
It’s also important to keep in mind that the goal for people with PIMD is not to catch up to their peers. Instead, the focus of their treatment plan should be on supporting the child and their family’s overall wellbeing.
Last, one of the most effective ways to improve the lives of people with disabilities is to put their caregivers in the driver’s seat. This means having parents, with the support of a trained clinician, work directly with their child.
Finding Extra Support and Resources
For caregivers, it can be physically and emotionally challenging to provide round-the-clock care to a child with PIMD. The good news is that help is available. There are a variety of support groups online that can offer additional information and insight. To find one that may be a good fit for you, talk to your doctor or a behavioral health clinician.
At Catalight, we provide support for parents who have a child with PIMD. Through our Connect Program, parents learn how to communicate with their child and understand their behaviors and needs. They also get tips on how to take care of themselves and plan for the future.