In the last four months, I’ve participated in person-centered planning for a number of young adults with developmental disabilities. The goal of these plans was to create a housing strategy, ideally to be implemented in the next 1-3 years. What turned out to be the elephant in the room in all these plans was the need to improve independent living skills. It didn’t matter if the individual was college-bound or likely to always need 24/7 supports — all needed work in this area if they were to live as independently as they were capable of doing. Given the shortage of supportive services, and the high cost of paying for them out of pocket, it became clear that skills training needed to be a top priority.
While my person-centered planning experience brought this realization into sharp focus, it wasn’t new. I have seen this pattern over many years, including in my own family. Schools tend to lack experience in teaching daily living skills, and prefer to focus on academics. The Massachusetts curriculum frameworks have few objectives related to living skills, and none that are addressed by high-stakes testing, so there is no obvious pressure placed on schools by the state to address the issue.
Families are frequently overwhelmed simply trying to get their student with special needs to school on time, to any therapies, and through any homework – and that does not begin to address the demands of work and caring for other children. A common dynamic is that families have attempted to teach their child skills in a haphazard fashion, adolescence has created a bit of a power struggle, and the fledgling adult perceives direction from Mom or Dad as nagging. If there is a history of Mom or Dad eventually giving up (“It’s easier to do it myself”), the young person may have learned to wait them out. More subtly, there may be unaddressed fears that contribute to an unwillingness to learn skills – a common one is fear of using the stove. Either way, the result is learned dependence that can hinder a young person’s ability to move out on their own.
So, how do you break the cycle? One good place to start is by taking inventory, to find out what skills your child has and what they need. The Adolescent Autonomy Checklist is a wonderfully comprehensive list of skills for independent living. It covers everything from setting the table to opening a bank account. Not all skills are realistic for all individuals, but just about anyone will benefit from something on this list. You might try completing the list yourself, and, if appropriate, have your family member complete it, too. Once you’ve taken inventory, pick a few key skills to work on. Here are a few examples, aimed at very different hypothetical individuals.
• Make a sandwich
• Wash towels
• Load the dishwasher
• Make dinner with a crockpot
• Use a debit card
• Take The Ride
• Find a street address
• Turn off the water main
• Flip a circuit breaker
• Fill out a 1040-EZ
Don’t try to do all the instruction yourself, especially if your family dynamic has reached the power struggle stage. Enlist the help of others. One very important place to start is the school, if your family member has not graduated or aged out. Eligibility for special education extends to age 22. Even if MCAS has been passed, you can defer taking a diploma while receiving transition services — IDEA was “designed to meet (students’) unique needs and prepare them for further education, employment, and independent living”. Getting out the door, clean and dressed for work, and able to navigate to the workplace all fit the bill. Skills training can and should be included in the IEP and addressed in the transition plan.
Another resource is the Centers for Independent Living. Run by and for people with disabilities, they frequently have programs where slightly older adults with disabilities take on a coaching role, teaching skills like money management and navigating public transportation. Here are links to Mass. CILs and to organizations with similar programs:
Don’t forget to include siblings and family friends. Travel training may sound dull, but going to Game Stop on the bus with a sibling might be an adventure. Similarly, learning to cook with Mom may sound like a chore, but working with adult family friends to prepare and host a series of dinner parties at different houses is a whole different matter.
Enlist technology. One young man was intrigued by learning to make a sandwich when the first step was for him to take pictures of every step of Dad making a sandwich. Similarly, there are a number of apps that can be very useful for teaching skills. Some examples can be found at http://autismhousingpathways.net/links/#Skills
Probe hidden barriers to find work-arounds. For example, someone afraid of the stove may be willing to cook with a crockpot, a microwave, a rice cooker, or a magnetic induction burner. Someone afraid to drive to a certain destination may be nervous because he’s never driven through a toll booth. There may be a route that doesn’t involve tolls, or the person may overcome the fear if he’s accompanied by someone the first time. Ask why the person isn’t willing to do something – “Does X make you nervous? Why?” You may be surprised by the answer.
Most importantly, look for buy-in from your family member. If he or she doesn’t own it, it isn’t happening. Some of this is a matter of framing. Just about all young people want their independence. Help them understand skills are the passport to independence. If they put up a road block, find a way around it. The person who doesn’t want to fold clothes may be willing to fold towels. Pride is also a powerful motivator. Someone who sees cooking for herself as a chore may be excited by the idea of cooking for the family. To help make the connection between skills and independent living, consider using Autism Housing Pathways’ housing workbooks (http://autismhousingpathways.net/services/presentations/; scroll down to “Housing workbooks”). Each touches on necessary skills, in the context of a larger workbook on living independently.
Acquiring better living skills is a key to cost-effective housing and successful independence. Taken in small chunks, it’s not only do-able, it’s a source of pride and accomplishment. Good luck!
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