Amid awareness month, Auburn College of Education professor offers independent living tips for those with intellectual disabilities

October is National Down Syndrome Awareness Month, dedicated to celebrating people with Down syndrome and raising awareness about their needs and accomplishments. Christine Drew, an assistant professor in Auburn University’s College of Education, has worked extensively with students with Down syndrome, specifically in the college’s EAGLES program, which provides access to the college experience for students with intellectual disabilities.

While working with the EAGLES program to prepare students to attend college, Drew noted areas that parents could work on at home to facilitate their child’s independent living.

Drew wants to reach parents and provide recommendations based on her experience and expertise, and below she offers them information and tips for skills that translate to increased social acceptance, employment, and quality of life for those with intellectual disabilities.

Q: What are some of the greatest challenges that parents of children with Down syndrome face in terms of helping guide their child to a more independent life?

CD: The biggest obstacle I have observed is that parents do not get training in the most effective ways to teach their children at home. Parents of children with Down syndrome face similar obstacles as parents of children with other disabilities which include the need for repetition and consistency of teaching for longer than typical children, the daily pressures of getting their child onto the bus or into the car for school, being unsure of how to teach and what to focus on teaching first.

Additionally, children with Down syndrome have physical characteristics that make teaching independent living skills particularly challenging. For example, many people with Down syndrome are shorter than average which makes reaching sinks, making beds independently, and even routine hygiene tasks like hair washing and shaving difficult. This usually leads parents to either help their child perform these tasks or to do the task for them. While this is very reasonable when children are young, it becomes a barrier to independence as they age.

Another challenge parents of children with Down syndrome face is ableism. Because people with Down syndrome have unique physical characteristics, people in the general public can typically identify that they have a disability, and infantilization, stereotypes and other ableist practices become common at school, work and across other settings. This makes conquering independence even more difficult.

Which tips can you offer to such parents in helping prepare their child for independent living one day?

CD: The first thing a parent should ask themselves is “What would happen if I was sick in bed? What could my child do on their own?” Then break down what your child is expected to do every day. Would they get up in time for school if I didn’t wake them up? Would they get themselves dressed? Would those clothes be weather-appropriate? Would they be downstairs in time for breakfast? Would they know how to make breakfast? Would they make healthy choices for their breakfast? Would they brush their teeth?

Based on those answers, parents can choose what skills are of highest priority and make the biggest difference in the child’s life. Some children may need accommodations to achieve these tasks like setting a daily alarm and purchasing clothes that are easy to put on and don’t require advanced fine motor skills (zippers or buttons). Parents can also work with occupational or physical therapists to find tools to support their child’s independence (extra-long and flexible brushes to use in the shower to reach their back). Parents can hire a board-certified behavior analysts (BCBAs) who can teach these skills using task analysis, positive reinforcement and visual supports.

Parents can also advocate for their child’s special education teacher to address some of these skills as part of their individualized education program (IEP) as well. If there are skills that cannot be mastered, parents should make a plan to achieve the same outcome for the person with Down syndrome. You may not be able to teach your child to cut their toenails due to their physical disability. However, you can teach them to use a credit card to pay for a pedicure.

Why is it important that critical life skills be taught early to those with intellectual disabilities?

CD: The importance of consistent practice opportunities cannot be overstated. If you teach a child a skill, let’s say toothbrushing, at age 6, then they have opportunities twice a day to practice and gain proficiency starting at 6. If parents teach the skill at age 10, then their child has missed out on 4 years of practice twice a day. Proactive skills like toothbrushing can help avoid bigger problems down the road like cavities and tooth pain.

Many of these self-care or independent living skills also have social and employment implications. Students who do not take care of their hygiene may find it difficult to make and maintain friendships and obtain and keep a job. The earlier a child can learn and master these skills, the more parents can build upon them. Getting dressed is one skill, but we can add to that by teaching the child to check the weather prior to choosing their outfit.

Making a snack is a skill, and we can add nutrition lessons on how to make a balanced snack and choose food that fuels their body. These skills can also lead to increased self-determination. Once a child or young adult is completing these tasks independently, it may also open up new living opportunities (living with a roommate versus living at home or in a residential facility).

Can you tell us more about Auburn’s EAGLES program and how it is changing so many lives for the better?

CD: The EAGLES program has many unique qualities, but the residential component (living on campus with roommates) and navigating campus life are so critical for students with Down syndrome. It helps parents, students and the program see the areas in which students may not be fully independent.

Students are expected to complete their own grocery shopping, eat on campus which includes budgeting their dining dollar and the number of meals they can have in the cafeteria. I think that parents do not always realize how much support they are giving their child in ways that become invisible (verbal, visual and other unintentional prompts). For example, parents unwittingly shape their child’s food choices because parents purchase household groceries and plan meals.

When young adults come to campus, they get to make their own decisions about when, where, and what they eat. We start to see areas where students have skills that are not developed because they haven’t had the opportunities to practice them without parental influence. This allows the program to provide support in many areas that weren’t recognized before the students lived independently.

Which independent living resources are currently available to parents of children with Down syndrome?

CD: Unfortunately, resources to teach independent living skills are scattered far and wide across the internet and with various providers (teachers, BCBAs, occupational therapists, and physical therapists). There are parent support groups on Facebook and in person, but there is no central listing of those organizations. There are also national, state and regional organizations that parents can find online that may be local to them.

One place to find well-written guidance is the National Down Syndrome Society, which has some resources online. However, very little of the guidance is actionable by parents alone. As stated earlier, behavior analysts (BCBAs), occupational therapists and physical therapists may all play a role in teaching independent living skills. Some of these professionals can be hired to work in the home, but insurance coverage varies widely. Additionally, as people with Down syndrome get older, it is more difficult to secure funding for services and find professionals who are willing to work with older clients.

Special education teachers can also teach these skills as they are critical to transition between educational levels and to post-school life. Parents of children, young adults and adults with Down syndrome face an uphill battle when teaching independent living skills in the home. Hopefully, parents can work together with providers to teach these skills and help their child lead as independent a life as possible.