One of the greatest worries and fears facing us is the question: What will happen to our child when we are gone? By taking steps now to create a Circle of Support, we can alleviate this worry. As discussed earlier in the Support chapter, your Circle is comprised of a special group of people who you have chosen to be a consistent part of your child’s life and to ensure that their dreams are realized. Utilizing the human resources in our Circle of Support we can begin to map out a detailed plan of what our children will need to have a fulfilling and secure future.
I suggest using a person-centered planning system to help identify what “quality of life” means to your child. Your plan will include logistical information about where your child will live, who will ensure that the plan is carried out, and the details needed to preserve the quality of their life and ensure their happiness.
To create an official Circle of Support you may wish to enlist the help of a friend or family member or hire a Special Needs Life coach to help you. Non-profit agencies are a good source too, as some of them may offer to pay for a Special Needs Life Coach to assist your family with creating a Circle. Some state agencies or local resource centers may offer to perform this service, but may not have the time or manpower to go as in-depth as you need.
To get started yourself, create a circle diagram of the people in different areas and disciplines of your child’s life. Place the people who are the strongest supporters in the center. These are the people who will stand by your child no matter what. Having a peer support person in the circle can be a great benefit to your child as friends can share a different perspective, and an honest opinion. Don’t leave out long distance family, friends and professionals.
It’s completely up to each family how “official” the Circle of Support becomes and if these members of the Circle are paid or not.
- Consult a professional. There are different ways to fund the Circle through groups such as trusts, or possibly creating a non-profit entity.
- Your Circle should have only around eight – ten members. The larger the Circle, the harder it is to manage.
- A formal Circle could have paid members such as a financial planner, special needs attorney, organizational planner, facilitator/coach, family, friends, and one or two peer supports.
- An informal circle is similar, but is comprised of unpaid family and friends. They may be knowledgeable in different areas but are not paid experts. The look and feel of the final Circle of Support will be dictated by your comfort and financial level.
- Don’t forget about financial planning, creating a Special Needs Trust and accessing any state specific Special Needs Trust Pools.