It’s Natural to Belong Part 2

In addition to learning about a very worthwhile resource for many I came away from the workshop with some new realizations.  The community guides really focus on finding meaningful activities for each person.  They had many methods in seeking out what an individual finds interesting.

From this, I realized that many may not know what their child or family member with disabilities finds interesting.  I found this very sad.  Some families just left this to the schools to do and seemed to have little interaction with their child or have any idea of what their child would like to do.  Some families, had vague ideas of interests but needed help in making these activities happen to be successful and meaningful experiences for their children.  This seemed to be the largest group represented.

Community guides are great for what they can do but there are limitations which I discovered in the conversations.  The people who they work with are people that will be able to get from point A to point B independently or for people who are quite high functioning.  Their services are geared toward finding opportunities but they are not for finding support people to assist in the activities.   I realized this during some conversations regarding issue with our son.

My son has a wealth of interests and we are NEVER lacking to find activities that he would be interested in.  What we do lack is personal support to be with him in all activities that he may want to do.  Our son has no interest or capabilities of doing anything with his hands (art), no attention span for games, very poor fine motor skills for anything that he may want to do so needs assistance with all fine motor skills.  He DOES have an insatiable interest in talking.  Not necessarily conversational talking but stream of consciousness, almost manic talking, not able to focus on any one thing for more than a few seconds.  Our son will never be able to take a city bus without someone with him nor will he ever be able to walk outside his campus without someone with him.  His social skills and awareness for danger are scary.

Many disability advocates do not understand the intense needs of people like our son.  One can not tell by seeing our son out with us the extremely high support needs he requires to be safe.  Someone is ALWAYS with him to help him maintain his orientation and safety.   Our son does not look as complexly disabled as some people who need wheelchairs or who are obviously more physically impaired but his support needs are extremely high.

Even with his needs as high as they are – he is fully able to participate in community activities.  It just takes more work, preparation, understanding and people but it is doable with the right supports.  Below is an example of one very worthwhile experience for him and the reasons it worked are because he had the right support person (THIS IS THE KEY TO SUCCESS) and the right cooking school and teacher who was open to his special needs.

Thomas has always wanted to be chef since he could talk.  He often refers to “when I’m a chef” meaning when he’s grown up.  His definition of a chef is anyone being around food so he very well could be a chef and we  fully support his dreams of becoming a chef.

There is a local cooking school and I saw their class list.  There was a pasta making class and I thought Thomas would just love it.  I went and spoke to the owner and she was very receptive to the idea and had worked with kids with disabilities before.  Thomas was also blessed to have the most wonderful middle school teacher of all time (Gretchen).  Gretchen was the first person who had ever offered to take Thomas out – someone who loved him and wanted to spend time with him, taking him to places that he just loved to visit.  Gretchen was a lifesaver for not only Thomas but for us too.  Gretchen agreed to take Thomas to the pasta making class.  We knew it would not be easy – it was 3 hours long – but it would be a great experience.

Gretchen knew Thomas really well – she knew when the talking was going on too long, she knew when he needed to go outside and walk around while the rest of the class was doing things he either had no interest in or would be too disruptive.  They would come back and pick up where they left off.  Everything went as planned and Thomas and Gretchen enjoyed the class and made a great dinner!

To this day, (5 years later) Thomas says “there’s my cooking school” every time we drive by.  This was a very successful experience but was only made so by having the right support person.

Our support people are the people who can make or break opportunities for our kids.  We need to honor our support people.

Thank you, Gretchen!

It’s Natural to Belong


It’s Natural to Belong was a workshop presented by the Community Guides from Total Living Concept  to help in creating community opportunities for people with disabilities.   These services are available to anyone (paid or not paid) on the DDD caseload who are not receiving residential services.

These two women who presented were dynamic and had a seemingly endless wealth of information on finding community opportunities.  I would highly recommend a call to them to inquire to see if they may help you or your family in making connections in the community.

See below for the information from the Division of Developmental Disabilities Webpage about the Community Guide program.  This is FREE to those who are eligible – Take advantage of these wonderful services!



Community Guide

A Community Guide is a support person whose role is to help your family become more connected to resources in your community. Working with your family on a short-term basis, the Guide will focus on specific concerns that you have identified on your Family Support Opportunity plan. Guides are knowledgeable about developmental disabilities, community resources, family concerns and problem solving.

How can a community guide assist my family?

Depending on your family’s needs, the role of the Community Guide can vary. Some of the ways a Community Guide can assist your family are:

  • Providing information about parent support groups
  • Linking you to recreational resources in your community
  • Providing you with additional information about your son or daughter’s disability
  • Helping you locate equipment, or coordinate household modifications for your son or daughter
  • Connecting you to counselors, therapists, doctors
A pencil illustration by Martha Penske of a man talking with a woman in a wheelchair. Read success stories about Community Guides.

read success stories
Sometimes a Community Guide will directly access services for you. In other instances, the Guide will give you information that will support you in accessing resources on your own.

How do I get connected to a community guide?

Your family support case manager will help connect to a community guide. As part of the Family Support Opportunity, you may be offered the following services: Medicaid Personal Care/CAP, Short-term Intervention Funding, and a Community Guide. If you choose the services of a Community Guide, your case manager will link you with a guide in your area who is personally suited for your family.

You have the option of requesting a different guide if you feel the connection is not suitable. No explanation is needed. Call your case manager to request a change.

How much time will a community guide work with me?

Your Community Guide is assigned to work with you for approximately eight (8) hours annually. Generally the Guide will provide this service within a one to three month period. At the beginning of your renewal year, you can request Guide services again.

What can I expect working with a guide?

Initially, the Guide will meet with you in person and help you prioritize the area in which he/she will assist you. The guide may link you directly to resources or may provide you with detailed information. At the conclusion of your time together, the guide will meet with you in your home for a final review of your plan.

Advocates United!

Did you know that the US Supreme Court’s 1999 Olmstead decision supports a continuum of care model?  If not, take the opportunity to read it here.

Today, I attended a workshop entitled “it’s Natural to Belong.”   I fully believe if we consider the building blocks of Belonging, Participating and Contributing in looking at meaningful activities we will provide a system which is stable and sustainable.   Communities are all around us and we can belong to many communities at one time.  Communities are relationships.

Somewhere along the line disability advocacy became divisive.  This is clearly illustrated in the letter which I wrote to Senator Adam Kline in response to a letter he wrote to me about this very issue.  I certainly do not support  a divisive advocacy movement.  My advocacy has clearly been for a continuum of care which provides safe, quality and cost-effective care in the most appropriate setting for each person based on their assessed support needs.

 No matter where this care is physically located, there can always be community.

In discussion today it was very clear that the place of residence has very little to do with how a person participates in meaningful activities, belongs to, participates in or contributes to their community.  The interactions are based on relationships.  This is what we need to promote and foster to enable people, no matter where they live to be involved in communities.

My hopes are that we can move past the divisions and realize that in order to have a true stable and sustainable care system we need to all advocate for a continuum of care model.