Thank you Lopez, Pettyjohn for support of McNesby Act

May 25, 2018

I want to thank our state senators from Sussex County, Sen. Ernie Lopez and Sen. Brian Pettyjohn, for their co-sponsorship of The Michael McNesby Full Funding for Adults with I/DD Act (HS 1 for HB 104). This bill has been sponsored by Rep. Melanie George Smith along with co-sponsor Sen. Bryan Townsend. It is truly a bipartisan bill to support vulnerable adults in Delaware.

The last time the system of care for adults with intellectual and developmental disabilities was fully funded was in 2004. It is important that we fund the nonprofit agencies that employ the direct support professionals who provide support to our loved ones in both day programs and residential settings. Most adults with I/DD like autism are living with aging parents, but will need to move to other residential settings when their parents become unable to care for them due to age, illness and death.

The direct support professionals are paid on average $11.50 per hour, a wage rate that is insufficient to retain dedicated professionals since they can make more working in retail with much less responsibility.

As the parents of a wonderful 25-year-old daughter with autism, we consider our family to be lucky. Our daughter Rose is enrolled in a day program, which provides support Monday through Friday, for five-and-a-half hours each day. Some of her time is spent in community activities, but she also works 15 hours per week in competitive employment, which she loves. She works at Fish On one afternoon a week, at Chick-fil-A two mornings a week, and this week will return to Pasqualini's Bakery where she enjoys decorating cakes and cookies. We thank these employers for taking a chance on Rose and many other young adults.

Just a generation ago, many children and adults like our daughter were in institutions, unseen and unheard. Now, the majority of our children are living at home with parents and going to community schools. Once they complete school, life can become more difficult with fewer supports for families and young adults. Direct support professionals, if well trained and paid a living wage, make it possible for adults with I/DD to work and be active in the community.

This should be a win-win. Living in the community vs. institutions is better for most individuals with disabilities and costs the taxpayer less. It's time to recognize that the impending crisis in care will harm vulnerable adults with I/DD and their families, but will also cost taxpayers more money if the community-based service system fails and the use of institutional care must increase.

We need the McNesby Bill now to turn back the crisis that is already unfolding, where at least one service provider has experienced in excess of 80 percent staff turnover, largely due to low wages, in the last year.

Please write to your legislators and to Gov. John Carney via email, to let them know you too support a sensible spending increase of $9 million, which is the minimum required to ensure a robust system of services and supports for adults with I/DD who are working and living in the community. At the same time you will be saving taxpayer dollars in the years just ahead and securing the federal funding match of $10-plus million to benefit the Delaware economy.

Thank you to all of the 20 Republican and Democratic senators and representatives, including senators Lopez and Pettyjohn, who have signed on to support the McNesby Act.

Cynthia and Tim Campbell


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