If you are like most of my clients whose children are getting older and becoming adults, you are preparing for “transition”. We have become better in our state in the past ten years at preparing ourselves and our children for their emerging roles as adults. We prepare estate plans and special needs trusts, we review legal authorities, such as guardianship, health care proxies and HIPAA authorizations. We even prepare applications for Social Security, MassHealth and the Department of Developmental Services. But we aren’t really talking about the healthcare transition.
Massachusetts has a wealth of pediatric physicians and specialists who have become adept at diagnosing and treating children with rare diseases, intellectual disabilities, autism and more. Personally, I have been most grateful to be in Massachusetts and have my daughter receive the best possible care which allowed her to live her life with dignity and grace. Even at the end, the hospice team and the Pediatric Advanced Care Team were able to stand by us and guide us through difficult decisions.
But what happens when your child is now 20 years old, or 30? What doctor should they see for routine colds and stomach bugs? Primary care physicians are largely overworked and have patient loads that don’t allow much time for a patient who needs more time for examinations and treatment plans. For example, a new antibiotic cannot be prescribed quickly when the patient is on 20 other medications that require scrutiny for interactions and side effects.
Last week, Disability Scoop posted an article on the very topic I was pondering. A study was done polling adult primary care physicians, mental health providers and others regarding their comfort level in providing medical care to individuals on the spectrum. Not surprisingly, most providers felt unprepared to do so whether through lack of resources or knowledge. See the full article here.
As you can imagine, it is not just adults with autism that are facing these issues when looking for adequate medical care in their community. Our clients have asked us on occasion to refer a provider for their special needs family member. We just don’t know who to recommend.
We are working on a resource list for our clients and we’d like your help. If you know of a doctor or other medical provider who is skilled at working with disabled adults, please share him or her with us so we can share with others.
To add your doctor or medical provider to the list fill out the form below!