By Karen Holt, Support Services Coordinator for Supported Living Program, JCS and Marci Baranauskas, parent of individual in Supported Living Program
COVID. There are whole worlds in that one word. Since March 2020, families all over the country have struggled with loss, change, and disruptions to their routines. That has been magnified many times over for individuals with developmental delays, their caretakers, and loved ones. Emergency regulations forced many day program providers to close their in-person services. Suddenly, individuals who were used to going out to see peers, favorite staff, and to take part in activities they love, couldn’t do any of that. In some cases, their families and care takers were reluctant to have outside people coming into their homes, so in many ways, individuals were unable to work on the skills that enable them to live successful lives in their community. Isolation set in. Service providers like JCS were faced with the challenges of helping individuals thrive and their family members cope with their own shifting work and financial responsibilities.
Enter Appendix K. This temporary regulatory change to the Medicaid Waiver, through which most of JCS clients’ services are funded, was put in place as an emergency response to the pandemic. Among other services that the adaptation to the waiver allowed, the Maryland Developmental Disabilities Administration (DDA) was able to offer family members of individuals receiving services the opportunity to be the “staff” for their loved ones. Those family members could be hired by providers as Appendix K employees to work on the goals and outcomes that their “regular” personal supports staff would help their loved ones to learn.
A very real benefit of Appendix K is that it has allowed JCS clients to have staff at a time when service providers are struggling with a statewide shortage of qualified applicants applying to work as direct support professionals. JCS would love to welcome and train new staff (If you know any, send them our way!) but until more people are applying for jobs, Appendix K has helped fill that gap.
JCS asked some client families what Appendix K parenting has been like for them. One parent said “As a parent providing care under Appendix K, it has been a great opportunity to see how your influence and ‘teaching’ manifests itself in your child. It is very gratifying.” Another mother stated that seeing her son’s goals in action, she felt more empowered to fine tune them so that they could work on goals that seemed to better fit him. In a committee meeting of the Maryland State Legislature last week, a parent who is also a small business owner spoke about how working with her son under Appendix K allowed her and her husband not only to make sure their son’s services weren’t interrupted, but also allowed them to earn money as their income shrunk due to the pandemic closures. She said that without the Appendix K earnings, they might have had to close the business they worked so hard to establish.
Families have been forced to think outside of the box to help their loved ones thrive through the pandemic. Appendix K has been one way for JCS and other providers to help them do that. It is set to expire six months after emergency regulations are lifted statewide, but because of the Delta variant, that could be extended. Stay tuned for updates!
Karen Holt is a Support Services Coordinator for the JCS Supported Living Program
Marci Baranauskas is a parent in the JCS Supported Living Program
JCS is a comprehensive human services organization providing a broad range of services that meet the diverse, multi-dimensional needs of individuals and families throughout Central Maryland. To learn more, visit jcsbalt.org or call 410-466-9200.