We are not looking to do away with valuable resources. Together, we can improve their impact by putting focused energy into developing complementary natural, community-based support systems for your household!
It’s frustrating to know that you are climbing a mountain that others have climbed before you and there are no “bread crumbs” to guide your ascent. We are organizing a statewide effort to pool information that can provide insights into how to access services. Plain language and clear processes are needed so that more families can make the best use of existing resources!
Rather than starting with, “What is being offered?” we suggest that every family begin with “What do we need?” It’s a profoundly different way to go about creating an optimal quality of life.
Almost every family we encounter expresses frustration over how, when & where to identify the help they need. One website contains different information than another. Things change without updating what’s shared. It’s confusing and frustrating!
They are the relationships and personal associations that we develop in the course of daily living. These can – and should – include classmates, coworkers, neighbors, family, friends, fellow members of a club or faith community, and anyone/anything else that may offer you help voluntarily or without paid reimbursement expected.
There will never be enough money in the budgets of federal or state programs meant to address the needs of the disability community. While the programs and services funded by government budgets are valuable, they become more valuable when combined with community-sourced solutions, aka “natural supports!”
Spending time with other people who care reinforces one’s dignity, sense of self-worth, and resilience. If we collectively can build better natural support systems, we decrease our dependency on services limited by paid worker availability and wait lists. You can help empower your child by reducing dependency on yourself gradually, at a pace you determine!
Caregiving burnout is a thing! A very big thing, in fact! By involving others in your child’s care and nurture, you are preparing everyone for the caregiving succession that must one day occur. Respite of even a few hours can rejuvenate our souls! Not having to worry about the future can be a huge relief.
No! Not at all! Many government programs provide great utility and value to our disability community. Unfortunately, there is more demand than available supply and “not enough money to go around!” Natural supports enhance/not replace paid and formal supports.
Principally, this is through a customized bundle of support programs and services that matches your family’s quality of life goals. Each situation is different. We are happy to chat with you about best practices – and introduce you to other organizations who each may offer a “slice of the pie” for your overall needs!