Wisdom From the Caregiving Journey: One Step at a Time

Chris Covey and her son, John Wennberg, are founding members of Seattle Children’s Alyssa Burnett Center community, where John started as a student and is now on staff as a classroom assistant and instructor. Here, Chris shares a part of their journey together, finding the right housing solutions for John as he grew more independent, and to meet new needs in the future.

For parents or caregivers of a person with disabilities, life is a journey with many different forks in the road. For any parent, childhood presents different stages and phases, with decisions to be made for your child when they are little and with them when they get older. Usually a child will eventually take over their own decision-making, and you are able to watch as their adult lives unfold. They may ask for support or guidance, but the decisions are theirs alone.

When we have a dependent with disabilities this path can be more convoluted. Health issues we deal with may be more involved and stressful than the usual well-child checkups and vaccinations. Education involves more than registering our kids for school, joining the PTA and taking them to special events. If you attend a church, being able to have your child participate may be more challenging than signing them up for a youth program and dropping them off.

When a typical teenager wants to get a job, they can go find one themselves and it is their responsibility to be a good employee. If they need to be taken somewhere once they can drive they can take themselves. I don’t mean to say that raising any child is a simple prospect. But having a child with special needs generally can be a bit or a lot more complex with many unusual things to work through.

A Housing Journey With Many Steps

For me and John, one of the biggest challenges has been housing. John lived at home with me and his brother and sister until he was in his 20s. He graduated from high school in 1996 and went on to attend Shoreline Community College (SCC) and go to work there on their IT helpdesk. During his college years he expressed a desire to live in his own apartment, which started us on our housing journey.

We researched different neighborhoods. We wanted something close to us; a reasonable distance from SCC; in Snohomish County where John received services; and that he could afford. Early in this process we applied for Section 8 housing support through HASCO (Housing Authority of Snohomish County); however, the waiting list was over two years. We didn’t wait for Section 8, but found a place in Mountlake Terrace where he lived happily for a couple of years.

When John finally made it to the top of the Section 8 list and was able to receive services, the management of his apartment complex wouldn’t work with the Section 8 rental allowance. His rent was $30 more a month than the housing allowance and it is against the rules for John to pay the difference. For him to receive this service he was required to move to an apartment where the rent was within HASCO’s allowance.

Over the next few years John lived in sub-optimal situations (he would describe them as horrible) while he attended school. Every year his housing allowance increased and he was able to move to a slightly better unit, until he settled into a place that worked for him. Eventually, in 2011, thanks to a gift from my grandmother, I was able to purchase a one-bedroom condo, and John was able to move in and pay the mortgage with his financial housing support. He has been living there ever since. With the passage of time, John now has a job that pays him enough that he no longer qualifies for Section 8.  He doesn’t earn enough to live independently in any other apartment situation – he can rent my condo because I charge him a third of the rental value I would be able to charge anyone else.

Our Next Fork in the Road

And now we are arriving at another crossroads in the housing journey. John is almost 50 years old. He is getting tired of living on his own, eating meals by himself, having no one but the TV or Alexa to talk to when he is home. He is also worried about me as I age, and what the future holds. He is afraid for the day when I will no longer be able to provide the support he needs to be successful and safe.

So, we have started to explore what other options are available for him. He isn’t old enough to qualify for senior housing. This could be a great fit as it would offer the ability for him to have his own apartment but a common space where he could gather with people, eat with others and enjoy activities. Unfortunately, they don’t make exceptions for the minimum age requirements so that isn’t a possibility for another five years.

But it’s by searching and asking around that you find new possibilities. It was the SHAG senior living facility in Bothell, that could not take John due to their age requirement, that told me about another place we could try. Now we’re looking at the Together Center in Redmond which offers affordable housing for people like John. Maybe this will be the right option for him.

Support and Sharing Make the Journey Easier

What I have learned on my travels through life with John is to be open to possibilities, and to be persistent and never give up. The thing that you need is out there somewhere. Sometimes you need to create it. Sometimes you find it where you least expect it. Every service and support John has received over the years I found with information from a friend, colleague, case manager or another parent.

You have to ask to be able to find out what people know. And generally, people are happy to share their knowledge with others in a supportive way.  So, whatever part of the journey you are on, and whatever forks come along your road, just keep on taking steps. Maybe it will take a while but they will get you to someplace great!

Resources

Find resources for housing for adults with autism on our Autism Center Patient and Family Education webpage and here:

• Community residential services for adults (Developmental Disabilities Administration, Washington State Department of Social and Health Services)
• Free benefits and housing review for Washington state residents (Partners4Housing)
• HomeChoice Down Payment Assistance Program for individuals with disabilities and their families  

Is there a topic you’d like us to cover in a future Autism Blog post? Send your ideas and feedback to [email protected].