Guest blog post by Sherrie Gainer, DCF Adult Protective Investigator in Northwest Florida
We received a report of neglect regarding an 18 year old who has cerebral palsy, Dandy-Walker Syndrome, is completely bound to a wheelchair and cannot speak.
The report says the young man is no longer eligible for Children Medical Services because his mother kept canceling appointments. Therapists are concerned that his skin and bone could give way and the mother fails to keep appointments. It is believed he may not be getting his prescribed medications. In addition to the lack of medical care, his personal hygiene has also suffered.
When DCF received the report, I was assigned as the adult protective investigator on the case. I immediately looked into the family’s history. No neglect cases had been reported in the recent past. I contacted the Agency for Persons with Disabilities to ask about services the young man may be receiving.
After getting some history, I visited the young man’s home to speak with his mother and to assess risk. When I arrived, I observed the home to be hazard-free. The utilities were on, the home was furnished, there was food available and the prescriptions were current.
The mother denied neglect of her son. She appeared to have a good support system and we discussed problems she had with her son’s medical needs.
After talking to the mother, I contacted the young man’s APD support coordinator to ask about her experiences with the family. She also has trouble getting in touch with the mother, which concerned her, but she was unaware of any missed appointments.
The primary concern of school officials was the mother’s lack of parental involvement. She doesn’t return calls and she misses scheduled appointments. The young man’s personal care is lacking. The young man has occupational and physical therapy at the school, but the mother doesn’t communicate with the therapists. The young man was a patient, receiving medical oversight and services through Children’s Medical Services, but they said CMS will no longer be involved because of the mother’s non-compliance.
I went to CMS to discuss the reasons for discontinuation of their services and was told the young man is still a patient, but because of his age they now need his signature or “mark” on all forms for service, not his mother’s. In addition, the mother is now responsible for making appointments for her son. The mother doesn’t understand the changes or the transitioning from pediatric to adult medical care. She is slow to return documents to the medical staff.
The physical and occupational therapist has been working with the young man since 2009 and communicate with the mother in writing. The mother does not keep appointments with them either.
I talked to family members who were determined to be supportive of the mother. Family income is limited. The home consists of children and grandchildren and the mother’s part-time job is necessary. The family’s transportation is dependent on her support system. The phone is often disconnected and her number changes when she gets a new phone, making it hard to communicate by phone.
When her son was a child, the medical providers played an important role in keeping his health services in order. Now that he is 18, the responsibility is the mother’s. She’s been used to providers taking the lead with her son’s treatments and that is no longer an option because of his age. Also, the mother has difficulty reading and understanding the forms and has to depend on her support system for explanations.
I am concerned that most of the issues between the mother and medical providers revolves around communication. Providers are from different agencies and they are unaware of other agencies involved.
The goal is to make sure communication flows between providers and the mother. I will make sure all providers are aware of the different agencies involved as well as keeping the mother informed of my activities.
I will also work with the providers to educate them on the needs of families with special needs children. It is important to start preparing caretakers when patients are 15 so that they are prepared to manage the patient’s medical needs.
I will continue to stay in touch with the family and believe the communication changes will make a big difference.
Hundreds of thousands of reports are called in to the Florida Abuse Hotline every year, most of them for neglect. DCF investigators do everything they can to work with and educate families and community providers so families can remain intact.
If you suspect someone may be the victim of abuse or neglect, please call the Florida Abuse Hotline at 1-800-962-2873. Even if charges are not made, our investigators may be able to help the family overcome difficulti