Perkins School for the Blind Transition Center

For People on the Spectrum, There’s No Place Like the Medical Home

Home — it’s where we seek care, comfort and respite from the world outside. It’s the one place where we can count on others knowing and accepting us. It’s a not-so-new concept that is finally gaining momentum in medical circles. It’s called the Medical Home Model and it has more to do with the philosophy of how primary care ought to be provided rather than with where medical services are delivered. And it has great potential for people with autism.

The Medical Home Model takes these concepts of home and packages them into a set of recommendations about what medical care ought to be. The result? Doctors whom you can rely on, along with a whole team of health care providers working on your behalf in a state-of-the-art clinical setting, complete with all the latest resources.

Both the American Academy of Family Physicians and the American College of Physicians have embraced this idea, which actually goes back to the 1960s, when it was first promoted by the American Academy of Pediatrics.

In this model, patients have their own primary care doctors who provide continuous and long-term care – doctors know their patients, their medical vulnerabilities and idiosyncrasies, their preferences and patterns, their attitudes and values concerning health, illness and medications. A doctor and a medical team provide continuous care, learn about the entire family and home environment and the impact they have on health. The team includes the medical specialists in the practice and a variety of doctors and other health care providers – nurses and therapists – who come together and talk with each other when the need arises.

In this model, the care is integrated and coordinated by the primary care doctor. Electronic health records are available quickly and efficiently at the touch of a button so that full histories can be readily searched. These health records push information to the doctors: abnormal blood tests, previous medication reactions and reminders for preventive screening. Tests are tracked and responded to in record time. Patient education is a rule, not a slogan, and people are taught self-management skills for their conditions. The latest of practice guidelines are obtained and integrated into medical care. And access to doctors and their advice is enhanced through e-mail and automatic call-back systems.

But what’s the advantage of a Medical Home for someone with autism?

Because autism affects so many different areas of development, people with autism require a wide range of providers: medical professionals, special educators, rehabilitative professionals and mental health experts. Fragmentation of care is the rule, not the exception. For people with autism spectrum disorders (ASDs), health care is typically a discontinuous series of providers, places and appointment times. Records are scattered among family doctors and occupational therapists, gastroenterologists, behavior specialists and speech and language specialists, who don’t speak with one another.

A recent study reported on in the December 2008 issue of Pediatrics recognized that families with children with autism have to endure greater financial, employment and time constraints than other families and concluded that “getting primary care in a medical home may reduce these burdens.”

But how is this proactive, wellness-driven, personalized care model different from our current health care system? The current system is a reactive, illness-driven, episodic care model, top-heavy with medical specialists who only deal with parts of patients and do not focus on the whole.

We need to change our model and provide good primary medical care. But this is not going to be easy. A September 2008 article by Dr. Karen Hauer and colleagues in the Journal of the American Medical Association reported that only 5 percent of a large sample of fourth-year medical students plan to go into family practice and 2 percent into general internal medicine. The remaining 93 percent all specialize and sub-specialize. This is a problem.

This is in great contrast to my recent experiences working in New Zealand, where most medical students plan on going into primary care and where specialization was the exception. Access to doctors seemed easy and doctors got paid the same, regardless of their specialty. In every country, there are cultural and monetary factors that influence the direction of new doctors’ medical careers. But year after year, we see that lifestyle is one of the leading factors influencing young doctors’ career choices.

The demands on a primary care physician are many, the supports few and the monetary rewards are far less than for those who specialize. The states have been taking this lack of interest in primary care seriously and the Obama administration is showing interest in this problem. Reimbursement reform to rebalance the medical services pyramid by adequately supporting primary care is being investigated in a number of states, including New York, where I work.

A Team Approach

Much like a Medical Home, my own New York City-based agency, Premier HealthCare (PHC) provides on-site access to a full range of coordinated services to meet the needs of people with disabilities. Each patient has an ongoing relationship with a personal physician, who oversees continuous and comprehensive care. As a member of the YAI/National Institute for People with Disabilities Network, PHC collaborates effectively with other agencies within the Network to provide other services to our patients. Through our Network, our patients get medical care, rehabilitative services, mental health care, case coordination and access to a variety of other New York State-sponsored supports. We offer multiple service locations in the Bronx, Brooklyn, Manhattan and Queens and open scheduling, including evenings and weekends.

When a person visits Premier HealthCare, he or she is likely to be greeted and seen by the same physicians, therapists, nurses, social workers and other trained professionals on each visit. We understand that a person’s care is intricately tied to other factors, such as familiarity and continuity. This is one of the many reasons PHC was cited by the U.S. Surgeon General as a national model for the provision of health care for people with developmental disabilities.

In our new Weight and Health Management Program, for example, a PHC primary care physician makes referrals to a nutritionist, physical or occupational therapists and counselors. All of these take place are overseen by a care manager under one roof, with a team of dedicated professionals sharing the responsibility for patient care and communicating with one another through a centralized database. This comprehensive approach is helping people with developmental disabilities reach their weight and health goals.

An advanced Medical Home will improve the access, communication and coordination of care, which is so essential to working with people on the spectrum. One health care professional will see the whole picture and oversee all of the care. The team will talk with one another, and the model will have to expand to include teachers, job coaches, and home health personnel. Reimbursement will have to recognize the heavy load of care management necessary for this group of vulnerable people. A new model to re-invigorate and modernize the delivery of primary medical care for people on the spectrum — and all Americans — is desperately needed.

Peter Della Bella, MD is Director of Clinical Programs for Premier HealthCare. Premier HealthCare is a member of the YAI/National Institute for People with Disabilities Network.

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