Antonia Pratt-Reid was asked by a friend if she would be interested in serving as medical director for Southern Oklahoma Resource Center in 2008. He told her that the state institution for profoundly intellectually disabled patients would likely be closed down in a few years.
But Pratt-Reid, a family nurse practitioner who has run her own practice in Oklahoma since 2001, had no qualms about taking on more responsibilities.
In fact, she didn’t think twice about driving an hour in a half each way twice a week to care for patients, only to return and see patients at her practice, Family HealthCare & Minor Emergency Clinic.
Fast forward to 2015 — Southern Oklahoma Resource Center, which was founded in the early 1930s, was closed by state mandate, and some 650 patients were moved into community homes.
Today, Pratt-Reid still takes care of about 300 of these patients, making house calls, and caring for patients who are transported to her practice.
According to the National Council on Disability, the number of people with intellectual disabilities and developmental disabilities (ID/DD) residing in state-run institutions has declined from a peak of 194,650 in 1967 to 32,909 in 2009.
The extent to which states continue to rely on institutions to house people with ID/DD varies significantly by state. Eleven states have closed all their state-run institutions, while others have resisted closing any.
Pratt-Reid noted that many nurses at the institution had served these very patients for 25 years, and some even for as long as 30 to 35 years.
She was extremely concerned that more than 75 percent of the new caregivers did not have any significant medical training aside from an 8-week course on medications.
The patient population presents with seizures, behavior disorders, and a myriad of mental issues. Some patients are ambulatory, while others are completely bed-ridden. There are patients with hydrocephalus . Children who were very spastic were given surgical procedures to release the muscles so they had no function of their legs.
Noting that there have been some good outcomes for patients since being transferred to these community homes, Pratt-Reid said there have been many poor outcomes.
“A significant amount have passed away,” said Pratt-Reid. “They’ve had medical problems where they had not been recognized. How can you expect someone with a High School degree to understand that someone is having appendicitis? You don’t. “
Providing Specialized Care
Although the female patients Pratt-Reid sees need medical attention related to their mental disabilities, it is also paramount that they be cared for as if they were in the general female population.
“We do preventive care for the women just as if they were out in the general population. They all need mammograms, and screening for ovarian and cervical cancer. They carry the same genes that their patients have or had. So, not only is there a health care need for them on their level of intellectual disability and their other disabilities, but they need the general health care that all women require,” Pratt-Reid said.
Physicals and Screenings Are Crucial
When Reid-Pratt first visited Southern Oklahoma Resource Center one of her main goals was to bring them up to date with their physicals and screenings.
“All these women need to follow-up with their mammograms, Paps, and pelvics. They go through the same things we do. They go through menopause, and they go through emotional behaviors, and some of these are directly related to their periods. We can’t forget that part of them. Many times these patients are forgotten for the fact that they still are men and women.”
In the past, patients who were profoundly intellectually disabled did not live past the age of 20, but today these patients are living longer. In fact, Pratt-Reid’s oldest patient is 58 years old.
“All of their health care needs need to be looked at as an aging population of their gender,” Pratt-Reid said. “They also get heart disease, breast cancer, ovarian cancer, COPD, lung disease, and strokes. When we are taking care of their basic needs we have to do preventative care for them. It’s the preventative care package that often goes unidentified with these patients.”
Because the patients are clumsy and their bones are thinner as a result of taking seizure medications, they are at high risk for falls. Therefore they need to have bone density screenings, as well as medication if their bone density is low.
“Hopefully we can catch things early or prevent them in this population, but we have to watch them closely because they can’t tell us when they hurt or when something doesn’t feel right,” she said. “Most of them don’t talk and if they do it’s gibberish. You have to know by their behavior, or if they don’t look at you, or they are more angry. Any number of things can mean something is wrong with them.”
Pratt-Reid teaches the new health care providers in community homes to make sure they do things like apply sunblock on patients who are taken outdoors. She keeps them hydrated, and has them sit up for an hour after receiving the bone density drug Fosamax.
She can’t help but be concerned about the future health care needs of children who are being born to mothers who have the Zika virus, many of whom will have the same disabilities.
“Were going to be looking at the need to care for these children depending on how bad this outbreak is across the world,” she said. “Many people don’t realize that microcephaly comes with a lot of different problems, including seizures. They are going to need long term seizure therapy, and are going to require the typical things everyone does for daily living. They may also require tube feedings and catheters.”
For now, Pratt-Reid is intent on educating providers about how to properly take care of this special population. “Yes they are still the delight of my life,” Pratt-Reid concluded with a smile.
Antonia Pratt-Reid holds a Masters of science (MS) degree, and is an advanced practice registered nurse (APRN), family nurse practitioner (FNP), and certified nurse practitioner (C-NP). She is CEO of Family HealthCare & Minor Emergency Clinic in Piedmont, Oklahoma.
Reviewed June 28, 2016
By Michele Blacksberg RN
Edited by Jody Smith