Who Will Take Over?

If I had to guess, I would say that about a third of the families I talk to state that there is no one who will assume the responsibility for advocating  for and managing their child’s life once they can no longer do this.  With no family to step up to the plate, what’s the solution?

There are several potential solutions, but for this blog I want to focus on setting up an informal circle of support.  It’s not as daunting as you might think.  Here’s how it works.

First, be sure you have completed some   sort of Life Quality Plan (offered through TERI at www.teriinc.org/ialq) or futures plan.  You want to know what is important and have something to share with the group.  Be sure the person with special needs participates in the planning process  to the degree they are able.

Next, find someone to facilitate and oversee the process.  To start with, this may be you.  If you don’t want to do this, I suggest you hire a Special Needs Life Quality Coach and pay them to get this off the ground and running.  It is well worth the dollars in peace of mind.

Once you have a designated person, the next step is to draw up a list of people you will invite to an initial meeting.  These will be people you think have some interest in your child’s life or who might develop an interest because of their relationship with you.  Think of teachers, aides, respite workers, family friends, neighbors, and relatives.  Get as big a list as you can, because several of these people will decline. Make sure you have a range of ages represented.  If everyone is over 50, it will create a problem in follow-through in the long run.  Consider phoning in or using Skype for people who are not local.  You could also tape the meeting and send it to them. Now, set a date and send out an invitation.

Have the first meeting at your house, and get someone to watch the kids so you are not interrupted.  Provide great snacks and drinks.  Make it comfortable and social.  Be sure people meet each other. Part of the value of a circle of support is that the people in the circle have their own network of help by turning to each other.

Make certain you understand the purpose of an informal circle of support.  This is to get together a group of people who commit to playing some LONG-TERM role in your child or adult’s life quality plan.  You are not looking for one person to do it all.  You are looking for several people to divide the job.  It takes a village…

At the meeting, follow this agenda:

1.       Facilitator introduces him/herself   and the purpose of the meeting

2.       People attending introduce themselves and their connection to the person with special needs.

3.       Share the special needs life quality plan

4.       Explain that you are hoping some of the people in the group would be willing to make a long term commitment to oversee some part of the plan.  (Tip: start small and then it can grow over time.  Suppose part of the Life Quality Plan is to make sure your child/adult has people in his life who are not paid to be there. Would someone be willing to be a “friend” by visiting once a month?  This could grow into someone who might attend meetings or advocate when you no longer can).

5.       Provide a list of areas where you are asking people to make a commitment.  Again, keep them pretty modest at first, if possible. Financial folks can oversee budgets for recreation and extras; professionals can oversee IEPs or formal service provision; etc.. Remember, think to the future when your child might not have you.  What do YOU do that someone might need to take over someday?  Use thi s in making your list.

6.       Define what is involved in joining the circle.  Is it monthly meetings?  Is it setting up a FaceBook where people can communicate about the person with special needs and only 2-3 meetings a year to get together?  The group commits can help you decide this, but it doesn’t hurt to have an idea ready to go.

7.       Give people a graceful way to opt out.  I suggest that you tell people they don’t have to decide right that minute (unless they want to).  Instead, say that the facilitator will contact them in a week to see where they stand.  This is where a facilitator comes in handy.  It is very hard for a parent to call friends in this situation (and hard for friends to say no to them).  A facilitator makes this much easier.

8.       Don’t give up.  A group of 4-5 people is a great start for a circle of support.  Over time, these people can pull in other members if needed.

Now, let’s suppose you are hit by a truck tomorrow (hope not, though).  Your support circle knows all about your child or adult.  They can take the lead in making sure that the Life Quality Plan moves forward. You have a safety net.

I highly recommend, though, that you provide for a paid facilitator like a Special Needs Life Quality Coach in your will or trust.  Leave money designated for this purpose.  This person will be the glue that holds the group together, and it is worth every dime to know that it is a paid position that will endure.

Get going so you can finally get rid of the worry about what who will take over. There is no time to waste.

If you are looking for a Special Needs Life Quality Coach to help you, leave a message and I’ll get you connected.  If you have a support circle already in place, please share your experience.  Till next week—Dr.K.