Diane Mack Family MattersGovernor Parson, Part II To review, Kelsey is my 45-year-old special-needs daughter. She’s had a difficult life. She has serious medical conditions, in addition to developmental delays. Basically she is a child, cognitively. She also wants to walk someday although during her last surgery, one year ago, she needed two titanium rods and 16 screws placed. This was rough on her. She hadn’t had surgery in 12 years. The good, no, the greatest program in Missouri is Self-Directed Services. It took far too long to implement in Missouri. There are no facilities or agencies to work with. Praise the Lord. No strangers come into your home. There is no abuse. We are with her most days. Plus, the staff receive a much better pay rate than if they worked for an agency. The team, Kelsey and our family, decide how much the staff is paid, when they work and what they do. A personal plan guides the care and the tasks they perform. The best of all is you, the family members, can get paid to care for your loved one! Governor Parson, Self-Directed Services (SDS) has been running for decades in other states. I’m sure you know that keeping a loved one at home saves the state money. Therefore, why is this department dragging its feet, not implementing the SDS program, and doling out hours in piecemeal format? There are 70-year-old parents waiting to receive services for their 50-year-old developmental adult children, praying they don’t go to their graves till they have something in place for their child. Why would a mom have to battle the state to keep her child at home and use the SDS program? Sorry, this is the good news. I can’t imagine the lives of these individuals and their families, with the SDS program in place. Through SDS, our family has produced a quality of life we had only dreamed about for Kelsey in the ‘70s. She is loved, protected, happy, respected and cared for in an exceptional manner. She has choices in life. Her staff is well compensated. I’m guessing Kelsey’s staff are paid at least $5 to $10 more an hour than those working for agencies. The federal and state budget, their waiver, follows the person. We witness her contentment every day. Another important element of SDS is no one has died of unnatural causes while living at home and having a loved one care for them. Governor Parson, did you know, there were over 916 DD adults who died of abuse or neglect in Missouri state facilities or while receiving state agency supports, between 2014 and 2020? Self Directed Services is the greatest success, the greatest achievement for this population. Bravo! Now for the bad. It was my understanding that in 2016, caregiver overtime became a federal law for caregivers providing in-home services. Why did we have to wait until COVID for overtime to kick in? And why are we going to lose overtime this year? It is challenging to secure a number of staff who will work, or fill in for other staff, when there is no paid overtime. During the weeks of my daughter’s sicknesses, or following a surgery, or COVID, we had staff willing to work extra hours, and fill in, but no one willing to work for free. Do you blame them? Governor, many states have progressively moved on in the support of individuals and their caregivers. Special-needs persons and their families live safe and healthy lives. Until next week ... Diane Mack is coordinator of Putting Families First, Jackson County’s Family Week Foundation. Email her at Director@ jacksoncountyfamilyweek.org.
