Movin’ On Out

By Glen Hoos

Reprinted from 3.21: Canada’s Down Syndrome Magazine (Issue #25: The Housing Issue). Click here to download the full magazine.

When you imagine your loved one with Down syndrome moving out on their own, what’s the first feeling that arises?

I’m not going to lie – for me, it was sheer terror.

I couldn’t imagine my daughter Becca ever living under any other roof but ours. And yet, today she’s in a home of her own with a lovely roommate and all the supports she needs to thrive. She is loving life as an independent adult.

Now, an outsider may look at Becca’s life and question my description of her as being independent. After all, she has round-the-clock caregivers to assist her with any task in which she requires extra help.

However, independence is not something you either have, or you don’t. Rather, it’s a continuum along which we all find ourselves. Who among us can claim to be fully independent in every area of life? We all need support.

Wherever on that continuum a particular person with Down syndrome may lie, a full and fulfilling life is available to them. That said, there are some core skills that lend themselves to greater independence. I asked some experts what skills are most important to maximize independence after moving out, how to cultivate them, and what forms of support can help fill the gaps.

Before we delve into the nuts and bolts of daily living, let’s consider some of the broader skills that undergird our ability to manage the tasks of life. Many of these fall under the category of executive functioning.

The eight components of executive functioning include:

• Initiation: The ability to begin an activity and come up with ideas or problem-solving strategies independently
• Inhibition: The ability to stop an action that is in progress (impulsivity ties into this skill)
• Attention: The ability to focus with the duration and efficiency required to learn important information
• Working Memory: Working memory refers to how we hold on to and work with information stored in short-term memory
• Organization: Organization allows us to manage not only our physical space but to handle the information and stimuli that we receive in an effective and logical way
• Planning: Planning, or the ability to manage our time, is central to being able to complete activities promptly, and according to a schedule
• Self-monitoring: Self-monitoring refers to the ability to keep track of one’s performance, assess how it measures up to a goal, and catch and correct mistakes
• Emotional Regulation: Emotional regulation refers to the ability to understand our behaviour and to manage our reactions
• Flexibility: The ability to think of alternative ways of doing things, integrate new ideas into existing thinking, and abandon what isn’t working to try a new approach

If a person has difficulty with their executive functions, this will also impact his or her ability to accomplish any task that requires planning, organizing, and executing tasks.

Dr. Susan Fawcett, Director of Therapy, Behaviour and Family Support at the Down Syndrome Resource Foundation, pinpoints a few factors that are particularly indicative of an individual’s readiness to live independently.

Planning: People with Down syndrome tend to thrive with routine, so helping them establish a healthy and productive routine is paramount. Remember when you first moved out on your own? You probably took some liberties that you wouldn’t have been able to when you lived with your parents. Without adequate structure and support, it is very common for adults with Down syndrome to take this to an unhealthy extreme.

Clinical Social Worker Michele Mattox encourages families to work together to create a plan for the individual to do something each day to care for their brains (reading or listening to an audiobook, doing a puzzle, listening to music), their body (walking, exercising, yoga, healthy eating), their environment (cleaning, organizing, decorating, gardening), and their people (socializing, calling a family member, writing a letter to someone). A colour-coded chart can be a useful tool to help them stay on track.

Susan emphasizes the need to limit screen time and stick to a reasonable bedtime. In fact, sleep is so imperative that she recommends that people with Down syndrome need to demonstrate the ability to manage their sleep schedule as a prerequisite to moving out.

Flexibility: The flipside of planning is flexibility. The ability to tolerate change is vital, because when you’re on your own, you have to be able to roll with the punches and adapt to unexpected situations. As essential as routines may be for people with Down syndrome, there is a risk of becoming too rigid and getting stuck when things don’t go according to plan.

To build up the flexibility muscle, Susan suggests that parents throw in little surprises and changes on a regular basis. For example, switch up the usual order of bedtime activities once in awhile, and heap on the praise when they adapt well.

Problem Solving: Those same situations that require flexibility also often necessitate problem solving. What do you do when the fire alarm goes off, the microwave stops working, or you lose your keys? Such unanticipated occurrences can really throw people for a loop.

Susan stresses the importance of assessing the size of the problem. There are small problems and big problems, and our reaction should match the size of the problem.

While we can’t have a gameplan for everything that could possibly happen, it is helpful to brainstorm a list of problems and solutions. Practice some of the most common scenarios and help them determine when they may need to ask for help, and who to ask. Consider creating some visual supports that lead them step-by-step through a problem-solving process.

Accepting Help: All adults with Down syndrome are going to need help in some areas, whether it’s hygiene, finances, or just staying motivated. It’s important for them to understand that needing help doesn’t mean you’re not capable or independent. In fact, Susan points out that all of us need help in different ways; for example, she doesn’t do her own taxes.

Normalize asking for help and accepting it when it is offered. A helping hand is just another form of support that enables people to live as independently as possible.

Activities of daily living include the everyday physical tasks associated with self care, such as eating and drinking, dressing, grooming, bathing, and oral and personal hygiene. 

The level of independence with which a person can manage these activities influences the type of independent living situation that is most appropriate for them. However, Arianna Coles, an Occupational Therapist with the Down Syndrome Resource Foundation, again emphasizes that independence is not an all or nothing thing; requiring support with some of these tasks does not mean that a person cannot move out of the family home.

In most cases, parents and caregivers work with their loved one with Down syndrome throughout childhood, adolescence, and even into adulthood to master these self-care skills. Arianna suggests following the individual’s lead and encouraging them to explore areas of interest; learning is always most effective when it is internally motivated.

Skills can be broken down into more manageable chunks. For example, think of all the steps that are involved in brushing your teeth: putting toothpaste on the brush, brushing all the teeth for an adequate amount of time, spitting, rinsing, and cleaning up. Rather than tackling the entire process at once, it may be easier for the person to learn one step at a time.

Parents should take full advantage of the people and resources available to assist in developing these skills. An occupational therapist can provide assessment and intervention to support an individual’s skill development. Teachers and educational assistants can help set appropriate goals and incorporate them into the student’s learning plan to reinforce the work you are doing at home. And don’t forget about siblings! Your child with Down syndrome likely looks up to their brothers and sisters and may want to do the same things they are doing.

Before the person with Down syndrome moves out, Arianna recommends establishing a baseline for what they can do, so you can pay attention to changes over time and respond to any decline in skills.

To set them up for success, consider any compensatory strategies and adaptations that would help them perform daily tasks. This may include adapting the task itself, modifying the environment, or providing assistive technology or equipment. Other tools in your toolkit may include visual schedules, task sequences, or setting timers to remind them to take their medications or leave for an appointment.

An appropriate level of hands-on support will also likely be part of the plan. Depending on the type of housing arrangement, the individual may benefit from support staff helping them daily or weekly. Regular check-ins with loved ones and friends should be prioritized, not only to support with daily living activities but to ensure the person has their social and relational needs met. Your relationship may take on new dimensions as your person enters this new phase of life, so make time to explore and enjoy that!

Instrumental activities of daily living take things a step further, incorporating more complex tasks such as grocery shopping, meal preparation, managing finances, community navigation, cleaning, organizing, doing laundry, and managing medications.

Danielle Juilfs, an adult with Down syndrome who has lived independently part-time for ten years, says this is the area where she initially needed the most support. While she was already an excellent cook and baker prior to living on her own, she needed help learning to do her laundry and shop for groceries. Her parents got a jump on things by introducing these tasks before she moved out.

Support workers helped Danielle learn to navigate the community, and now she confidently takes transit wherever she needs to go. In fact, Danielle no longer requires support workers at all.

Many people with Down syndrome benefit from life skills training, whether as part of their schooling or through a specialized adult program. In addition, the same types of supports described earlier in this article can be used to facilitate independence in these more advanced activities.

When it comes right down to it, there is no one-size-fits-all model for independent living. What works for your family may look very different than what works for someone else. But with the right supports in place, your loved one with Down syndrome can live their best life – whatever that means for them.