Planning for the future is important for all adults as they grow older and life changes. But for people with developmental disabilities – especially those who have been cared for by their parents, who are themselves aging – it is even more important.
Where will they live? Who will take care of them? How will brothers and sisters be involved, especially if some of them live a distance away? What resources are available to help with options?
Without adequate plans in place, adults with disabilities may face disruptive transitions when families can no longer provide care, endure emergency placements in inappropriate settings and suffer through inadequate financial and legal safeguards, all of which place a strain on siblings and other relatives.
See what siblings who have participated in Journey Forward have to say.
WisconSibs Journey Forward (formerly named Future Is Now!) Planning is offered as two half-day workshops:
You’ll learn how to get started and overcome barriers many siblings experience. You’ll get tips on how to involve your sibling and other family members. Local professionals who have experience working with families with disabilities will discuss the value of Special Needs Trusts, guardianship and other important legal, care, and work issues. You’ll leave with tools for successful planning and a good sense of the support and care of other adult siblings sharing similar concerns and joys. Siblings are encouraged to bring their brothers or sisters with disabilities along with other family members important in the future plans of their sibling.
Siblings learn what is important in making sure the plan is successful. Local professionals will discuss with siblings the options available for housing, independent living and finances.
Once you’ve completed both workshops, you will have a written document which describes your sibling’s desired future living arrangement, community role, and lifestyle preferences. This written plan will also include practical directions and information for maintaining continuity in his or her daily life, and describe the supports needed to achieve these outcomes. This will help give you and your family peace of mind.
Fewer than half of families have developed specific plans for the future of their relative with a disability. But even when there are plans, siblings are often not fully aware of them. Future is Now! helps siblings connect and get informed.
“I participated in the first series of the Future is Now! program offered by the Fox Valley Sibling Support Network (now WisconSibs) with my sisters Katie and Melanie. Melanie has Down Syndrome and lives with our mother.
“Siblings attend together with their sibling who has a disability and talk about their dreams for the future; such as living arrangements, job planning, daily activities, spiritual life and personal relationships that would like to be maintained. Together, we outline in detail each segment of our sibling’s life and write out on paper what our thoughts are. We have individual discussions with our sibling and also group discussions with all of the program participants.
“It can be eye opening when you make the time to literally sit down with your sibling and ask direct questions about what their own dreams are. So often we make decisions for our sibling (or parents and caregivers make decisions for the person with the disability) without asking for their input and we assume we know what they want.
“The Future is Now! program gave us the tools to have the discussions in our family about planning. We also benefited from the conversations that we had with other adult siblings who are going through the same planning process such as us. During every session, we were all able to laugh together, cry together, and praise each other about our accomplishments; which were huge!
“I would definitely recommend this program to any family that has a person with a developmental disability within it. Even if you already have a concrete plan for that person, it is still a good idea to network with other siblings and share ideas, experiences and brainstorm with each other. We are not alone and we are blessed to have the existence of the Fox Valley Sibling Support Network (now WisconSibs) in our community.” – Anne Muller