UPDATE: March 1 2024 – Johnson said she was was contacted by Louisiana Department of Health and Cameron’s Medicaid Case Manager to advise that Cameron has his HCBS back.
UPDATE: As of February 28, 2024, Tish Johnson reports that Louisiana Medicaid has not yet approved the reinstatement of the Home and Community-Based Waiver (HCBS) for her son, Cameron.
Originally published February 10, 2024; updated February 28, 2024.
By KAREN LAGRANGE COX
Tish Johnson of Evangeline Parish has a fifteen-year-old son, Cameron, with autism. In early 2023, she placed Cameron at Pinecrest Developmental Center in Pineville, Louisiana. Pineville is a Medicaid-certified intermediate care facility for people with developmental disabilities.
After Cameron was at Pinecrest, Johnson alleges Cameron was continually abused and neglected. By September 8, 2023, Johnson stated she had taken Cameron out of the facility and brought him home with her and her husband.
Before Cameron was placed at Pinecrest, he had a Home and Community-Based Waiver that provided services for him. Once Johnson took him home, there was no emergency contingency in place on the Federal or State level to provide Cameron with the same services he had before going to Pinecrest.
Almost five months after Cameron returned home, Johnson advised that she met with Louisiana State Health and Welfare attorneys Meah Johnson and Taylor Chrisman to tell them of Cameron’s story and his loss of his Home and Community-Based Waiver and other services. Others in the meeting were Johnson’s State Representative, Rhonda Butler of District 38, Julie Foster Hagan, Assistant Secretary for the Office for Citizens with Developmental Disabilities (OCDD) in the Louisiana Department of Health, and others from OCDD.
Johnson said she spoke to the officials not only for Cameron but for all those who are in the same situation as Cameron and to help prevent the same from happening to other individuals with developmental disabilities (such as autism).
Several days after the meeting with Louisiana officials, Johnson said she received a phone call from Troy Abshire with the Acadiana Area Human Services District (which serves those with developmental disabilities) that Cameron was getting his Home and Community-Based Waiver back. She also said she was told that not only was the state of Louisiana putting a contingency in place for those leaving a facility, but also a contingency was being put in on the federal level.
Below is what Johnson posted on her Facebook page:
February 1, 2024, by Tish Johnson – Used with Permission
“What a win today! Great day at the capital! I took my son out of Pine Crest on September 8th of last year due to abuse and neglect and have een fighting daily to get his waiver back that he went in with at Pine Crest and lost upon leaving. We were on a waitlist for over 10 years to get his waiver and I have made it a point to educate and implement these programs into our more rural communities since moving home from Lafayette in 2016. I told State Representative Rhonda Butler I wanted something put into effect that in emergency situations that the initial benefits the patient had would be returned to them. Today, that happened!!! I am so thankful that no other adult or child (or parents) will have to fight should this ever happen to them.
This still stuns me that no contingency was put in place until now. I was also able to tell Cameron’s story about how much he and the other residents went through at Pine Crest. Heartbreaking documentation and pictures were shown and solutions were offered. Praying for change.
Pine Crest had some of the best nurses as well as some great teachers, it was the after hour residential staff (Direct Care Service Workers) that were awful. From what we are hearing, this is a nation wide issue. Please continue to pray for the residents that are still there. They are trying to correct things. Praying they can.
Thanks State Representative [Butler] for taking the time to help your constituents. She was in drug court with the Governor and took time out for my son today. Congrats on being elected Vice chairman for Health and Welfare, you will no doubt accomplish great things. She will also be advocating for legislative disparities in health and welfare for our rural areas.
Today was such a win! Some days we have broken windows and doors and other days we have days where Cameron is dancing at the special Olympics and cooking French toast, that’s autism! No matter the day, my son is truly my hero. Happy he is healing and thriving!”
