onewayImagine it, someone else makes all of your decisions: where you live, who you live with, and what your daily routine entails. This person might be a family member, but in most cases everything from the choices available to you to the final decisions made are governed by someone you don’t know.

Someone who doesn’t even know you controls your life.

The house you live in isn’t bad, but you’d rather live closer to the neighborhood you grew up in.

Your roommates are okay, but you never saw them before you came here.

You wish your friend could live with you, but the rules say no.

You wish your family could visit more often, but it’s too far for them to drive for more than an occasional outing.  

Life In a Group Home

For the lucky ones, it’s not a bad life, it’s just not one they chose. For others, the choices made for them could include negligent or even violent caregivers, unpredictable roommates who can hurt or frighten them, and boring jobs that are only tolerable because they offer a chance to get out of the house. Some have nothing to call their own and no family to advocate for them.

Imagine if the one thing you looked forward to was being able to spend your allowance on a special treat each month: a new CD or DVD, a trip to your favorite restaurant, a new hairdo or outfit, a trip to the movies. Those are the bright spots in your routine.  Now imagine that your budget for those things is $60 a month and will soon be $50 or even $30.

This is the fiscal reality for those living in group homes and intermediate care facilities in Illinois.

A recent article written by Associated Press reporter Carla K. Johnson entitled Illinois reduces pocket money paid to adults with developmental disabilities,” details the policy change in that state.

In the first increase in two decades, lawmakers temporarily raised the allowance last year to $60, up from $50 for people in group homes and from $30 for residents of intermediate care facilities. Now, it’s returning to the lower levels in place before the law, which granted the increase for fiscal year 2015 only.

Some, unfamiliar with the situation, may question why people living on government services need “pocket money” in the first place.  If everything is given to you from taxpayer dollars, why should you need an allowance and what difference does $10 a month make? The fact is most, if not all, of the policy makers really can’t understand what it’s like to be dependent on Social Security benefits.

What’s a Community to Do?

The Road We’ve Shared exists to raise awareness of issues faced by adults with Down syndrome. The realities of group home living is one of those issues. While progress is being made which will help avoid these issues in the future, something needs to be to done to help those living this way now. Parents of adult children with all types of intellectual and developmental disabilities need to come together and help each other. We have to do what we can to help influence policy and reach out to those who are or feel isolated. Sometimes reading a story that lets us know we’re not alone can bolster the strength we need to carry on with our caregiving. If you’re on social media, look for groups of other parents to listen to and share with.  Maybe we can be a friendly face to someone in a group home in our area.  Contact your local Arc to find out where they are and who can get you connected. If you’re so inclined, advocate within your local and state arena and be a voice for those who are often forgotten.

We’re here to help. We’re always looking for stories like the one mentioned in this post. If you find one we’ve missed – send it to us and we’ll share it.  If you have a story of your own to tell – let us know and we’ll help you tell it. If you have an idea about how to make things better – we’d love to hear it!

We do not see things as they are. We see things as we are.


The first step is to educate ourselves so that we can help ensure that all perspectives are included in our community efforts on advocacy.

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