Proposed state cuts could hurt special needs people

Written by Karen Scallen

The well-being of adults and children with intellectual and developmental disabilities in Louisiana is in jeopardy right now. For some, their lives hang in the balance as they wait to learn if Louisiana will be able to keep their life-saving services in place.
“Cutting the budget will not be enough to keep our supports in place,” said one parent in the New Orleans area. “Louisiana will have to find new revenue as well.”

Without the supports she receives to care for them, her twin sons will have to be placed in an institution. The boys, now teenagers, attend their local high school and have significant intellectual disabilities to the extent that it is impossible for one person alone to provide the care and safe environment they need at home.

Kodi Wilson of Baton Rouge, whose son Braden has Leigh’s disease, a rare mitochondrial and neurometabolic disorder, is on a ventilator, feeding tube and takes 31 medications a day. He has six different machines that help keep him alive at home. Without the developmental disability services that provide home nursing so she and her husband can work, Wilson says she will have to quit her job and go on food stamps and state assistance in order to care for Braden.

She also says the services Braden receives have kept him out of the hospital, reducing his hospitalizations from 15 to 20 a year down to only 1 in the past 4 years.

“Preserving our state’s system of developmental disability services is critical to my son’s life. It is a pro-life issue,” Wilson says.

Endangering children
Jeff Reynolds, undersecretary for the Department of Health and Hospitals, who handles the department’s finances, certainly agrees. In an article by Mark Ballard in the New Orleans Advocate, Reynolds was quoted as saying, “If I start cutting waivers, then you’re talking about putting disabled clients out on the street, making them homeless; in essence putting them out on the street to die.”

Recipients of these waivers are working families, like my husband and myself, who can become eligible for services through a waiver of Medicaid income rules based on their child’s disability.

In my family’s case, our son Kevin, 14, an eighth grader at Harry Hurst Middle School in Destrehan, is due to have open-heart surgery this summer. Without the Children’s Choice Waiver that allows us to have Medicaid, we will be in a financial crisis when he has surgery.

Other Louisiana developmental disability services provide crisis assistance and stipends to help families manage the extreme costs associated with raising a child with significant disabilities.

Many of these programs were cut to the bone under the previous administration. Individuals and families have been at the state Capitol during the special legislative session fighting to preserve the developmental disability services that are left through sensible cuts elsewhere and raising the revenue needed to support our state’s most vulnerable citizens.

To express your support for preserving developmental disability services for disabled children and adults through a balanced of appropriate cuts and new revenue sources, please contact your legislator today. You can find your legislator by visiting http://www.legis.la.gov/legis/home.aspx.

For more information, contact Karen Scallan at[email protected]. Scallan is a parishioner of St. Charles Borromeo Parish in Destrehan.