Could we organize care differently when it comes to intellectual disabilities? (1/2)

I’ve posted two columns about my brother-in-law Vincent’s mismanaged hospitalizations. (He’s now being fit for a special $600 shoe that may prevent future hospitalization. More on that another time.) I’ve wondered if some of the new accountable care organization/medical home models could do things better.

Vincent suffers from fragile X syndrome. This condition arises from an unwanted repeated sequence of amino acids at a particular spot on the X chromosome. If the unwanted sequence is sufficiently long, our cellular quality-control system stops producing a critical protein for cognition. People with more than 200 of these repeats are defined as having the full mutation, though there is no firm numerical threshold for disability.

Fragile X is the most common heritable source of intellectual disability. About one in 3,800 males exhibits the full mutation. About 90 percent of males with the full mutation will display low IQ, characteristic physical features, and behaviors such as hand flapping and palm-biting which you might not expect to be genetic but mysteriously are. About one fourth of boys with fragile X syndrome also satisfy diagnostic criteria for autism. One in 2,400 females carries the full mutation. Females experience more varied symptoms, since their second X chromosome provides some protection. Twenty-five percent of females with the full mutation have IQs below 70.

Because these conditions are rare in the general population, the typical pediatrician might see a few dozen children with the most serious fragile X-related conditions over her entire career. Not surprisingly, the condition is often overlooked or mistreated. (For more on this, see here and here.*) Moreover, physicians and care systems are poorly-equipped to address many concerns that patients such as Vincent are likely to have.

Chicagoland is a big, densely-populated metropolitan area. It includes thousands of people who share Vincent’s diagnosis or related ones. Patients already cluster to some extent at a handful of well-regarded speciality clinics. We could be more creative here. We also have thousands of people receiving care from doctors with no particular expertise or supports regarding intellectual disabilities. New mechanisms such as Medicare accountable care organizations and Medicaid medical home models could allow us to mount a more coordinated effort to address patients’ needs.

Indeed it’s easy to draw up a not-so-modest list of services that seem well-suited to these care models.

Behavioral counseling and support

Caregivers for both adults and kids living with intellectual disabilities face a variety of behavioral challenges that require careful and compassionate management. In our case, the most difficult challenges involved eating. Vincent is well-behaved and kind. Yet his care poses challenges. In the years he lived with us, he would regularly wander down to our kitchen and trash it looking for snacks.  He has a curious aversion to carrying his identification card, which poses safety issues if he wanders off. I was beside myself trying to find creative strategies to deal with these issues.

Many families face much worse difficulties and require help. Social work and psychology support services could be especially valuable to reduce caregiver burnout, and to improve patients’ safety and well-being.

Genetic counseling and related services

Conditions such as fragile X raise complex issues for both patients and their families. A well-designed medical home would integrate genetic support services that families often do not receive today.

Obesity prevention/nutrition support

Vincent weighed roughly 340 pounds when he moved into our home. He now weighs about 200. He still experiences lasting health consequences. Many others among the intellectually disabled are obese or overweight.  Exercise is a challenge. Many face fundamental limits to their self-regulation skills. Food offers a reliable source of pleasure and stimulation for people who don’t have many other sources of enjoyment. Family caregivers don’t have a lot of time or money to carefully prepare optimal foods. Nutrition support services could be very valuable.

Improved coordination with school-based and social services, including issues such as safety/quality of workshops and group homes.

Individual physicians can manage patients’ immediate health concerns. As has been explored in geriatric care and in coverage of interventions for emergency department “frequent flyers,” improved care coordination models could identify and address broader threats to patient well-being.  In doing so, one might even address avoidable hospitalizations and reduce other costly patterns of medical care.

Again, high rates of  obesity among the intellectually disabled highlight broader concerns. Group homes and sheltered workshops across the country feature cheap junk food–even as their residents and participants receive costly medical interventions to manage cardiovascular conditions. Better care management models might be more effective in changing these practices. Medical providers might also support cost-effective social service models that might improve health, yet which receive a small fraction of the dollars devoted to medical interventions.


I could go on. A well-designed medical home model might provide improved access to respite and dental care, improved management of psychotropic medication, better care management of “dual-eligibles” receiving both Medicare and Medicaid.

I’m not precisely sure how such a medical home model would work. I have some qualms about such models would work: whether they would save money, how they could be fairly paid. I’ll save these issues for a subsequent post.

*Postscript: Pardon the missing links. An oversight compounded by moving away from the computer all morning.

Hidden information below


Email Address*