By Jay Katz, Field Ombudsman
I have worked in the field of disability for over 40 years. It’s been profoundly uplifting, interacting with individuals who fiercely strive to achieve, learn, and be independent. I’ve been blessed to know their families, and share in their accomplishments.
Most of my professional life as a Social Worker has been with people who have developmental disabilities, Downs Syndrome, Cerebral Palsy and Autism. Each day posed different issue, some culminating in moments of success, and some that left me frustrated and sad. But those experiences were real, with real people, and with people who shaped my life.
I am now retired and volunteering with San Mateo County Ombudsman, where I can continue to serve extraordinary people living with disabilities, and working alongside staff and volunteers who share my passion.
As expected, with this new professional endeavor, I am learning new aspects of disability. One issue in particular has disturbed me. It involves communication between family or residential care home staff and hospitals, when individuals with developmental disabilities are admitted. Not all individuals who live in residential homes have family-members to be advocates on their behalf. On two separate occasions, at two different hospitals this year, I was made aware of individuals who were sent to hospitals without adequate information being transferred to hospital-staff related to the patient’s eating/swallowing factors, communication issues, or decision-making abilities. As a result of this gap in communication, serious consequences occurred.
As with most hospital issues, the factors are complex. Each hospital is different, and have staff with different professional experiences. Their experiences with people with developmental disabilities is not always extensive. Admitting such an individual may be challenging. Upon admittance, if the patient is unable to provide a detailed explanation of important factors such as swallowing/eating ability, the hospital should inquire and find out the answer. This in-depth actions is not a guarantee.
If a residential care home administrator or family member is in attendance during the admittance, they should be asking questions as well as providing details about swallowing, communication challenges, and patient behavior/aptitude. The problem is that too much important information is “assumed.” Ramifications of improper assumptions can be catastrophic.
Clearly, when admitted, the hospital must be aware of “who is the patient’s go-to person” or advocate, and the hospital should never hesitate to use this person. Developmental disabilities, and other conditions, are incredibly complex. Just because a person is in a hospital doesn’t mean that the facility has all the answers. Issues of daily living skills must be explained in detail. And, when answers are provided, that information needs to be passed-down from the Administration to every Nurse and Attendant involved in their care. This communication-action is attempted, but is not automatic, and again, should not be assumed.
When I look at this overall problem, it is so overwhelming that I don’t know where to start. Every hospital is doing their best to improve. Nevertheless, residential care home staff, and hospital personnel, need to be assess their procedures…they need to re-think and refine systems so that individuals with developmental disabilities are receiving the best care possible.
Advocates for the patients must ask questions, check-in frequently at different times of the day, follow-through, and make their presence known. For people who are not able to communicate their needs and abilities, professionals must take the lead. It starts with communication and not assuming anything. Our role as Ombudsman and advocate can be major factor in assisting to keep people on-task.