The experienced described in this thread are beyond sad. And, the fact that bogleheads are having this much difficulty with the system makes it a certainty that the average parent has it even worse.
I'll post our family's experience, which is more positive, in hopes that someone can be heartened by it. Our daughter with special needs is 32 with I/DD and she's intellectually at the level of a 5-6 year-old who is typically developing. We live in Madison, WI and moved here, from Illinois, 20 years ago due, in large part, to its reputation as one of the best cities for adults with disabilities.
Our daughter's services are all self-directed under Wisconsin's IRIS program. She lives in an apartment with a live-in caregiver/roommate and works two jobs for a total of 20 hours per week with job coaches and transportation provided by her vocational agency. Her annual Medwaiver budget is set based on her needs and totals roughly $100K per year. We, as her parents/guardians, do all of the self directing (hiring caregivers, approving budgets, etc.). Her siblings expect to step into our shoes when necessary.
Her SNT is in place and funded at a level that will be able to provide $10K each year for supplemental needs. But, her income from SSDI and wages, plus her Medwaiver funding cover her current needs. We feel lucky that things are running so well and know how much work it has been to get to this place. Our advice to other parents would be to seek out parents 10-20 years further down this path to learn from their experiences and develop strong relationships (ideally beginning in the high school years) with the best local agencies to maximize your child's services and budgets.
I'll post our family's experience, which is more positive, in hopes that someone can be heartened by it. Our daughter with special needs is 32 with I/DD and she's intellectually at the level of a 5-6 year-old who is typically developing. We live in Madison, WI and moved here, from Illinois, 20 years ago due, in large part, to its reputation as one of the best cities for adults with disabilities.
Our daughter's services are all self-directed under Wisconsin's IRIS program. She lives in an apartment with a live-in caregiver/roommate and works two jobs for a total of 20 hours per week with job coaches and transportation provided by her vocational agency. Her annual Medwaiver budget is set based on her needs and totals roughly $100K per year. We, as her parents/guardians, do all of the self directing (hiring caregivers, approving budgets, etc.). Her siblings expect to step into our shoes when necessary.
Her SNT is in place and funded at a level that will be able to provide $10K each year for supplemental needs. But, her income from SSDI and wages, plus her Medwaiver funding cover her current needs. We feel lucky that things are running so well and know how much work it has been to get to this place. Our advice to other parents would be to seek out parents 10-20 years further down this path to learn from their experiences and develop strong relationships (ideally beginning in the high school years) with the best local agencies to maximize your child's services and budgets.
Statistics: Posted by CFOKevin — Thu Jun 20, 2024 10:59 pm — Replies 43 — Views 5767
