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Marsha Shappell’s Story – Inverness, Florida

Iverness, Florida – My 48-year-old daughter, Monique, has the approximate mental age of 3 to 4 years. She has limited expressive vocabulary. Monique currently resides in a group home in Citrus County, is involved with Special Olympics and other social groups for I/DD individuals. I am Monique’s Guardian Advocate, and bring her home frequently.

When we moved to Florida from New Jersey 14 years ago, we learned about Florida’s incredibly long waiting list for residential services, and subsequently decided to place her in an Intermediate Care Facility for Developmentally Disabled (ICF/DD), which had openings. After a couple of years, we realized this was not the optimal place for Monique to live; she let us know, with limited vocabulary, that she was anxious about returning. It was a lengthy process, but we succeeded in getting her into a group home via the Home and Community Based Services “iBudget” Waiver.

Monique has truly “blossomed” since she has been in the community setting, making strides in both communication and social integration. This could not have been accomplished but for the dedicated staff at both the group home and at the Adult Day Training workshop she attends 5 days per week.

Monique depends on Direct Support Professionals for help with daily tasks such as showering, doing laundry, taking medications, as well as appropriately interacting in social situations. Change is her nemesis; Monique’s significant communication issues, as well as autism spectrum disorder, contribute to her high level of anxiety; this at times results in a skin-picking habit that necessitates doctor visits. Frequent staff changes often cause her to “act out”, especially when they need to “get in her space” to help with showers and give medications. Monique thrives under consistent care and behavioral techniques. “Revolving door” staff turnover, or possible closure of her group home, would be devastating to her, and to us as aging parents. This is the reality we face: dedicated staff, years of adjustment, behavior management techniques – all have helped her “blossom” at present – and this potential loss of all that she has gained is incomprehensible.

Monique had Companion Services through the iBudget Waiver, but that companion became unavailable, and there are currently NO companions to fill this need. This means that I must also serve as her companion, drive her to all activities and Special Olympics practices and meets, in order for her to have some social life – and exercise, which is so crucial to the health of my daughter as she approaches middle age. Although staff do their best, they are overworked, and there are no extra staff to take group home residents to activities.

I have never experienced this level of need for my child and others like her, in all years as a citizen of Florida. I am fearful of what will happen to my daughter when I pass away. We must not allow our kids to be forced back into institutional living! We implore Florida State Legislators and our Governor to increase funding for Direct Care Staff! They need to make a living wage; they cannot survive on dedication alone – they have families and bills just as we all do, and their current rates of pay are appalling.

Please help my child and others like her and support significant recurring funding for Direct Support Professionals. Imagine your own child functioning at a level of a 3 to 4 year old and being truly dependent on staff for daily survival.

Marsha Shappell (for Monique LeFer)

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