by Laurel Powell, MS
According to a recent study of 2016 Medicaid claims, nearly 10% of youth in foster care are found to have an intellectual and/or developmental disability, often referred to as I/DD. That is a huge percentage of children, especially considering that only 2-3% of children meet criteria for I/DD in the general population. Many foster care agencies express that their families and resource parents are not equipped with knowledge and experience necessary to support this population of children. Because we know knowledge is built on understanding, let’s explore what it means to have an I/DD and how we can help children who fall into this category build resiliency.
Understanding Intellectual and Developmental Disabilities
We can sometimes get lost in the alphabet soup of service system acronyms and it often helps to step back and think about what we are talking about. Intellectual Disability, or ID, is a type of developmental disability because it is diagnosed before a person turns 22, typically when a young child is not meeting developmental milestones or when they are in the school system. ID means someone has limitations in intellectual functioning (such as learning, reasoning, problem-solving) and in adaptive behavior (activities of daily life like communication, social skills, and self-care).
Developmental Disabilities are a group of disabilities that influence a person’s development and are diagnosed between the time a person is born and age 22, which is when we typically see a person’s body and brain have developed fully. This group of disabilities can impact a person’s physical movement, learning, language, behavior, hearing and/or vision. It’s important to remember that having a developmental disability does not necessarily impact a person’s cognitive functioning, but having an Intellectual Disability does.
For many children with I/DD, the journey intersects with Autism Spectrum Disorder (ASD), characterized by many of the same adaptive challenges as other developmental disabilities, such as communicating or interacting with others in unexpected ways, or difficulties adhering to what we often think of as social norms. A person can be diagnosed with Autism at any point in their life. This does not mean Autism can pop up at any time. It is likely that a person has always exhibited Autism characteristics, but they could have been attributed to another diagnosis. The more we learn about autism, the more people we see who fit the category for it. Understanding and embracing the diversity within ASD and I/DD is paramount to providing holistic supports. It is important to remember that each child’s journey is uniquely shaped by their individual abilities, needs, and experiences.
Understanding Trauma and I/DD
We know that all children who have entered the foster care system have experienced some level of trauma. Children with I/DD and ASD are at far greater risk for traumatic experiences than the typical population. Children with I/DD are four times more likely to be victims of crimes than their typically developing peers. They are 2 times more likely to experience sexual abuse, with studies showing the prevalence of sexual abuse against children with Autism being 16.6% compared to 8% for the general population. Finally, the risk of abuse against children with I/DD and Autism increases 78% as they begin to enter the service system. These are ALARMING statistics…and they are important for us to recognize, acknowledge and change. Recognizing and addressing their unique needs with sensitivity and compassion is essential to fostering healing and resilience.
Communicating and Honoring Time
One of the biggest challenges for supporting children with I/DD is a challenge with communication. Communication barriers may pose significant challenges, but they also present opportunities for connection and understanding. We typically think that the child’s communication is the impairment to “fix” when making simple adjustments in our own communication style can make significant changes in communication barriers.
Communication is so nuanced. Our brains have learned over time how to understand communication based on past experiences. Without realizing it, typically developing brains can interpret body language, decode subtleties in tone of voice, and use all that information to understand unstated intentions of a person we are communicating with. Now think about what life might be like for a person whose brains do not always make those connections. Think about the difficulty in understanding body language and subtlety in language…you don’t understand what people are hinting at, so you don’t understand people’s intentions. If you have a history of being hurt or seeing others get hurt, you might be suspicious of others and have a really difficult time understanding when situations are safe.
Oftentimes, people with I/DD have difficulty in understanding abstract ideas like emotions in others as well as in their own bodies. So, there are times when a person might not understand what emotion they are feeling and may react in a way that doesn’t make sense to others to try to rid themselves of an uncomfortable feeling. Things like being able to assess a situation can be difficult for people with ID. Our brains automatically resort to primal instincts such as the flight/fight/freeze/fawn state when we feel unsafe. For people with communication challenges, more time must be spent providing them with reassurance of safety in order for their brains to focus on more difficult skills like decoding communication and emotional regulation.
Communication is an opportunity to embrace diversity. We typically default to verbal communication. Written lists, picture schedules, using “First/Then” boards, and pairing words with signs are all great supplements to verbal communication. These communication tools may seem cumbersome at first, but, after some practice, they can be quickly implemented and are often helpful tools for all children. Utilizing diverse communication strategies helps to empower children with I/DD by instilling safeguards for understanding.
Consistency is key in a world often characterized by uncertainty. Children with I/DD feel safest when they can accurately predict outcomes. Telling them they are safe is wonderful AND it isn’t enough. They must feel that they are safe. This feeling is built through repetition of safe and comfortable outcomes. By establishing predictable routines and environments, we create safe havens where children with I/DD can thrive and grow.
Finally, honor the space for processing. Patience is not merely a virtue but a guiding principle in our interactions with children with I/DD. Families move quickly. For children and youth with I/DD, slowing down to ensure everyone has had time to process information can make all the difference. This allows for children to process expectations and it allows for caregivers to process a child’s reaction. Children and youth with I/DD who have experienced trauma often build maladaptive coping skills that help them to survive. Unlearning those coping skills and relearning new, safer skills will take time for everyone involved.
Having I/DD does not prevent a person from being resilient. Taking time to understand, being thoughtful in your communication, and being willing to try new things can help foster resilience in children and youth with I/DD. These techniques can also foster resiliency in us as caregivers, allowing us to build our own skills in caring for children and youth with a variety of abilities.
Laurel Powell, MS is the Family Support Program Manager with the Family Support Network of NC. To learn more visit here: www.fsnnc.org
