Op-Ed: North Shore Lacks Housing Options for Youth With Special Needs

Among the countless reasons that make the North Shore such a magnificent place to call home, one has to be the many social and policy innovations that can trace their beginnings here. From championing progressive education in Illinois to lowering railroad tracks in response to lost lives, North Shore families, businesses, houses of faith and school districts have contributed to making life better in their communities.

Collectively, we value a rewarding quality of life, enriched early childhood education and a commitment to volunteerism. Creating solutions to community concerns is just one of our many strengths.

As I write this, our house is filled with the remnants of my recent trip to the Northeast: Manchester Monarchs championship gear, Red Arrow Diner water bottles and what’s left of the Whoopee Pies is all that remains after unpacking. It has become a familiar scene over the past year or so as we travel from Winnetka to be with our teenage son, Schuyler.

Last fall our oldest son, Schuyler, moved to a phenomenal therapeutic boarding school in Windsor, New Hampshire. Since 2007, Schuyler had lived at two different therapeutic boarding schools, each within driving distance from our house. Whether it was 45 minutes south or two hours north, weekends usually found our family on the road for a visit. We fought more than our fair share of Lollapolooza, Bears games and Bike the Drive traffic along the way and Brewers, SummerFest and Great America gridlock on the way home. What we wouldn’t give to have those traffic problems back. Now when we want to see Schuyler, we have to buy a plane ticket.

It might surprise you learn that our family is not unique. There are numerous families throughout the North Shore that live apart from their minor children. From Idaho to North Carolina and New Hampshire to Colorado, many of our friends, neighbors and colleagues must travel at great cost of time and money to share something as a simple as a family meal.

Raising a child with special needs is both a challenge and a privilege. When the needs of a child vastly outweigh the collective resources of home or school, the decision to move them to a residential placement is one that is not made lightly. Geographic separation of parents from children, grandparents from grandchildren and siblings from one another is a drastic and dramatic choice, yet one that affords the best opportunity for positive outcomes.

Over the past nearly eight years, I have talked with many other parents about the difficulties involved with maintaining balance within the family when one child is living away from home. Do you fly out for Parent’s Weekend and miss a football game or school play for another child? Do you sign your daughter up for karate here, or buy a plane ticket for your child to come home for Thanksgiving? Last year, it cost us $800 to bring Schuyler home for the holiday. Moms and dads shared their desire for their child to be closer to the family home but understood the benefit derived from living in such a structured and therapeutic setting

Parents knew that despite the hundreds of attempts at replicating an environment at home that allows their child to thrive, their efforts have failed. For many families, several local therapeutic day schools were a good fit, yet the question of where their child would live remained elusive. What most of us wanted was to have our child’s boarding school located close to home. If only we could airlift our child’s school to the North Shore. If only we could have a local option. If only there was a place that provided the constant support, structure and supervision our kids need outside of the school day. Most of the existing supportive housing options are open to adults and those with developmental disabilities; our kids don’t meet criteria for either.

Nursing homes were out of the question, as were many of the state-run facilities that primarily serve wards of the state. I even considered moving out of our home and renting an apartment in town for Schuyler and I to live, with my husband and two younger children remaining in our home. This was certainly not what I had in mind when I thought about getting married and raising children. There had to be a better way—and we found one.

The Chasing Hope Foundation was created to establish supportive therapeutic housing for children who have yet to “age-out” of the school system. While most students complete high school by age 18, those receiving special education supports have until their 22nd birthday to fulfill the requirements for graduation. So why not have a house for our kids to live while they are completing their formal education? It sure beats having seven moms living with seven sons in seven separate units over a Starbucks off Green Bay Road.

This solution makes sense in several ways—having a local housing option can save school districts tens of thousands of dollars each year per student (NTHS 203 alone spends roughly $1.5 million annually on placing students in therapeutic boarding schools). Families would be able to spend their disposable income at local stores instead of the state and local economies of their child’s distant school. Students would be able to take advantage of career readiness opportunities with local employers that speak to their strengths. And being a short drive away means that families are together more often and can focus on healing and supportive relationships with each other.

The response to the CHF has been overwhelming positive. The most common reply we hear is that people can’t believe that something like this doesn’t already exist. Well, it soon will. Please join us in perfecting a replicable model for community-based supports for our children who live with autism and related brain disorders. These kids are smart, capable and loving, just like everyone else’s kids, and come from good families. You ride the train with their parents and are in yoga class with the moms. You see them in the community, but might not know how to reach out. That’s OK, too. What is needed is your support for making this vision a reality. We welcome your thoughts and comments as our projects move forward. Having these bright students immersing themselves back into the communities they call home is mutually beneficial for all stakeholders. Let’s add this innovative solution to the long list of North Shore success stories and know that we have undertaken efforts to make it better.

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