Will you wait till you're 90 to make a plan?
A compelling new PBS series, ‘Rethinking Lifespan,’ delves into the issue of transitional planning, exploring the deep stress and seemingly insurmountable problems faced by parents of children with disabilities as they reach retirement age and beyond. PBS Correspondent and Producer Christopher Booker asked a powerful question during an interview with Ron and Virginia Socwell, parents and caregivers to their 51-year-old son, Kent. "Did you think you would still be in this caregiving position at your age?" asked Booker.
Ron's answer was revealing: "Well, I didn't know– you know, who else was gonna do it?"
The Socwell's special needs parenting situation is common. There are estimates that almost one million Americans over 60 are providing care for a loved one with a disability. Many parents who are caregivers are not prepared for the day they can no longer do it. And when Booker asked who will take over care of their son when they're gone, the answer was stunning.
Virginia says, "We've– we've been looking. We've been thinking. We've been thinking a lot about it. But I guess we're just– we don't know where to go."
These special needs parents admit, at age 85, to just being at the beginning of making preparations for their son. They are not alone in this, and not having a plan is not their fault.
According to Stefanie Primm, Executive Director of a Wisconsin disability service provider, the funding in a service system (both state and federal government systems) neglects the needs of the caregiver and the support for the caregiver. Special needs parents don't necessarily know about the resources they will need for the future care of their child.
The vast majority of parents are left to figure out what to do, short and long term, without proper tools to help them plan.
If the Socwells don't put something together for Kent, the alternative upon their death is that he would be moved to a brand new setting (one with which he's unfamiliar) after being placed in emergency housing by a social worker. Decisions for his ongoing care could end up with his brother or with the state. Either way, Kent would be uprooted from a home he's known for more than 50 years and sent to people who don't know him at all.
92-year-old Betty Daniels described her situation this way: "We've tried the– to look ahead and– and get as many of those things taken care of– as we can. But there's always– there's always a struggle."
Daniels and her husband connected with Primm's agency for help. As Wisconsin plans to develop their first ever task force on caregiving to help special needs families like the Socwells and Daniels, the lives of special needs individuals are in the balance.
Families like Betty's and Virginia's are all over the country...all over the world. They are actively and adamantly caregiving with very little notion of how to plan for the future of their child with special needs. They have not been led to powerful tools which could simplify life and guide them effectively and efficiently toward creating the plans they need to ensure the ongoing care for their child.
People and agencies may want to help, and they look to creating services and infrastructure "down the road." But there's a way to prepare fully NOW. There's a tool available at the click of a mouse or the press of a button. 85-year-olds Ron and Virginia could access everything they need to start their plan for Kent today by simply using a device. 92-year-old Betty could plan for the needs of her daughter with special needs without a struggle and get "those things taken care of" right away. Anyone, at any age, can create a Vest for their loved one with special needs and guarantee their seamless care.
No struggle. No worry. No social workers deciding what to do. No family members without a clue how to continue care. No mountains of paperwork to store or give to others in folders or boxes.
One tool, one site. Everything you need to make the plan for your child with special needs, regardless of their age. Simple, accessible, intuitive, easy. Don't wait till you're deep into retirement to begin thinking about what to do for your child. Your child is depending on you to make a plan now and have it available today, tomorrow, and well into the future so they are seamlessly provided for.
What have you been waiting for to get started on your plan for your child with special needs? A pandemic?