Pediatricians tend to have more experience with special needs children than adult doctors. They do routine developmental screening and over the course of their careers will have dozens, if not hundreds, of children who failed a developmental screen and were subsequently diagnosed with a developmental disability. But for an adult child, it’s time to move on from the pediatrician’s office and out into the world of adult medical care.
Parents need to know that, unlike pediatricians, adult medicine providers often learn nothing about caring for people with developmental disabilities. Some get a mention in genetics classes of trisomies and Fragile X. Young doctors are often not provided any training in caring for this special subset of patients. This places the parent in the position of having to educate their child’s doctor. This is a burden parents may have been carrying already if the pediatrician was not up to speed on their child’s condition. It is unfortunate that this is so, but it is better to be prepared. Many organizations serving the special needs community were started by activist parents who advocated for their children in a world where parents had once been told to pack their special needs child off to an institution. Advocacy matters!
The first order of business is finding a doctor who can see a young adult child. This can be challenging, but there are ways to do it. First, parents should ask the pediatrician for a recommendation. He or she has transitioned many patients into adult care, and may have leads on who might be appropriate. Parents can also contact their state’s office of developmental disabilities for possibilities. Families living in a large urban area may be fortunate enough to have clinics that specifically serve the special needs community. Parents who are acquainted with other exceptional parents should ask them where they take their young adult child.
Once a prospective doctor is found, parents should call and find out if the doctor can accommodate their young adult child’s special needs. Parents should ask if the office is wheelchair accessible. (My own doctor’s office is not.) Other questions to ask: Are there long wait times that would be difficult for some patients? Can the office deal patiently with vocalizations and stereotypies (repetitive movements)? How does the staff approach giving vaccines or drawing blood on patients with a low tolerance for procedures? Parents should be frank with the doctor’s office about their young adult child’s special needs. Parents should find out specifically how the practice plans to accommodate their child.
Next, parents need to assess the level at which their child can participate in his or her own care. If their child is higher functioning, can their child be taught to attend doctor’s appointments independently? This is an important life skill that should be evaluated and encouraged. Does the young adult know his or her medications, allergies, and medical history and conditions? Can the young adult be taught these things? It’s worthwhile to assess this formally. If the adult child’s level of functioning is such that he or she needs to be accompanied by an able adult, whether a relative or a support staff person, that adult can bring the medical records to the first visit. It is helpful to type out a list of the young adult child’s medications, allergies, surgical history, medical history, medical conditions, and specialists’ contact information. The right doctor will appreciate the efforts.
I well remember the first patient I saw who had a ventriculoperitoneal shunt for hydrocephalus (pressure on the brain). He was coming to me for the first time when I was working at a clinic for people with cerebral palsy and other developmental disabilities. I knew what a VP shunt was and what it was for, but I had never seen a patient with one. This was a young adult who came with both of his parents. The father showed me the shunt and traced its course along the ear, and I noted it with interest. When he was done, I turned back to the mother who looked like she was about to cry. She said, “you’re the first doctor we ever had who did not display arrogance when we tried to show them something.” I was taken aback, then felt angry that these parents had to go through that. Unfortunately, parents might, if they haven’t already, encounter doctors who lack the humility to learn from them about their young adult child. They should go somewhere else if the doctor can’t be teachable.
Many patients with special needs have specialists, but will also age out of their pediatric specialist practices. That doctor may be the best resource for helping the parents find an adult specialist who can assume care of their young adult child. Those who are lucky to live where there are clinics dedicated to the developmentally disabled population will often find that they have specialists in addition to primary care doctors. Parents may find that adult specialists are less versed in caring for adults with developmental disabilities, and they will need to educate and advocate. It’s a shame that this is so, but many parents have probably already learned to be their child’s best champion.
The American Academy for Cerebral Palsy and Developmental Medicine has published on the topic of what makes the transition of care successful. They say the following:
Factors associated with improved transition outcomes included family participation, promotion of self-efficacy, and meeting the adult team before transition. Poor outcomes related to transition included housing instability, unemployment, difficulty forming relationships, increased hospital admission rates, and decreased use of rehabilitation services. Barriers to quality transition programs included poor health team communication, limited adult provider options, and lack of financial resources for specialized care. No standardized transition approach was identified.*
As a physician caring for people with developmental disabilities, I had to learn basic things:
- Patients who were institutionalized need to be screened for hepatitis viruses
- Adults with Down syndrome undergo an accelerated aging process
- People with cerebral palsy who do not walk develop osteoporosis
On-the-job learning was the order of the day. There are hundreds of medical textbooks that are hundreds of pages long. I know of one modest-sized textbook on caring for people with developmental disabilities. However, resources for the young adult child’s physician are available. The right physician will be open to learning. The American Academy of Cerebral Palsy and Developmental Medicine is a group of medical providers committed to furthering practical knowledge of this population. They are an excellent resource for any young adult child’s physician. Also, the Down Syndrome Society and the Down Syndrome Medical Interest Group offer information for medical providers.
New Milestones : Finding and Delivering Care for Special Needs Patients
Got Transition
Information about transitioning to adult care
www.gottransition.org
Down Syndrome Medical Interest Group
A resource for professionals
www.dsmig-usa.org
National Down Syndrome Society
A must for anyone who loves someone with Down syndrome
https://ndss.org
American Academy for Cerebral Palsy and Developmental Medicine
Excellent resource for medical providers and caregivers
www.aacpdm.org
There are medical providers who will be open to delivering care for special needs patients. Parents should know their child’s needs and use the resources available to find the right provider. As people with developmental disabilities become more accepted in society, knowledge of their special needs is growing among health care providers. I used to provide a rotation for family medicine residents so they could have exposure to this special population. This showed an interest on the part of the residency director in broadening the residents’ training. Hopefully, more physician leaders are becoming aware that they need to be knowledgeable about caring for people with developmental disabilities.
Providers can find the resources necessary to provide excellent care if they are motivated to do so. However, the number one resource is the parents!
ABOUT THE AUTHOR:
Paula Sinclair, M.D. is a family physician who cared exclusively for people with developmental disabilities for six years in various agencies in New York City. She became a sought-after speaker and educator in the community. She is currently semi-retired and practicing geriatric medicine in the Bronx.
Read the article here.