• 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.

    • You’ve just given a great argument for an NHS-like system. Because the NHS is gov’t run, medical issues that affect other gov’t functions, like housing for the disabled or schooling get addressed.

      My son’s was sent to speech therapy at age 2.5 when it was already flagged as a significant issue that would affect his schooling in a few years, rather than waiting until he arrived in reception (kindergarten). This was really valuable, as almost all the sounds he can make (the full range of English) were learned in speech therapy, not picked up and he arrived at his first year of school being fairly intelligible.

    • What struck me is the amount of social services Vincent uses. Medicare will not pay for social services. It will only pay for medical ones.

      Medicaid will pay for social services. Many individuals with DD are dual eligibles. However, when you have one payer paying for medical and a different one paying for social, things rarely work out well in terms of the providers coordinating with one another.

      That’s a potential argument for managed care. A smart MCO could approach all the MDs, behavioral health, special education, etc practitioners in the area and get a bunch of them in network. The problem is, there are very few MCOs which have experience with the DD population. In my experience, the Arc, which is the main advocacy group for the DD population, is suspicious of managed care, and if that suspicion translates to the broader DD community, then MCOs wouldn’t get very much enrollment.

      Or yes, you could go single payer, but you still need some mechanism to get some particular group of people managing care. And you also haven’t solved the divide between medical and social care. If we had Medicare for all, the statute limits Medicare to paying for acute and rehabilitative services, not supportive services and social services. Expanding Medicare to the latter services would be very expensive without a means test. I’m a single payer person at heart, I’m just pointing out the flaw in the single payer argument in this particular case.

      At least one of the states in the Financial Alignment Initiative is planning to put the DD population in managed care (Michigan, iirc). I’m worried for the reasons above: MCOs don’t have experience with this particular population. Some MCOs have experience with managing long-term care for seniors. But the services used by the DD population may be very, very different. The MCOs might not get the right providers in network. They might inadvertently write some policies in a way that’s OK for seniors but not OK for the DD population. Things like that. I can’t say what will go wrong because I have no experience with the DD population and the demo hasn’t started, but we will find out.

    • Vincent is very blessed to have you and your family.

      An important improvement for these patients would be to standardize the nomenclature and objectives. In California, the educators frequently use entirely different evaluations, diagnostic labels and treatment recommendations than the American Academy of Pediatrics and American Board of Pediatrics. There are conflicting agendas. The most obvious is that when there are two patients equally impacted by fragile x, the one whose symptoms are disruptive in the classroom, typically receives more attention and services from educators despite the pediatrician’s recommendations which focus on global objectives.

      A physician flourishes in the environment that best suits him/her professionally and personally for the long term. By far. many of the BEST specialists for families with fragile x, or other major genetic diseases, are those who also have these disorders in their own family. For me, that has meant more than 30 years in a solo regional consultative allergy-immunology practice. This provides the most flexibility for my patients and my loved ones on the home front.

      Accountable care organizations [ACOs] can work very well for physicians who want to choose them. These are typically physicians for whom the first lines of the “standard of care” fit almost all their patients. For me, ACOs contradict every objective I value in my road less traveled because I exclusively treat outliers – patients who lie outside the usual spectrum of illness. In solo practice, I’m totally independent from a group that refers to itself, promotes referrals to itself, and wants to meet ACO objectives for the financial rewards.

      It is not an unintended consequence that ACOs and related government programs are intended to make it much more difficult for solo physicians to compete. . .offer choice. . .to even survive.

      My consultation room is sufficiently crowded with me, my patient, their family, the state licensing board and God. There is no room for the fifteen member Independent Payment Advisory Board, fellow ACO physicians, and government actuaries. ACOs inevitably promote group-think to streamline and save. Diversity and choice, the lifeblood of medicine and lifesaving for outliers, can’t be streamlined based on these government objectives.

      Sadly patients and their families for whom individualized care means quality and quantity of life, won’t know what they’ve lost in an ACO model until the opportunity to opt out to an independent solo physician is gone.

      Dorothy Calabrese M.D.,
      Allergy & Immunology, San Clemente, CA

    • Thank you for these posts. My son has special needs and we are struggling with many of the same issues you struggle with. Thankfully, his health is decent and we don’t need a lot of direct health care.

      However, all of the above are things that every family with a special needs member seem to to struggle with. I can’t tell you how many of our friends have to fight for any kind of support services for their kids with autism. For good or bad, autism seems to get the most attention and money but people still need to fight for services.

      Our son has a genetic disorder too and no one knows what to do with him. We’re lucky enough to live in a good area that has a ton of people that care and push the envelope of what they’re allowed to do in order to help out with all the kids they know. Teachers especially have been a huge help to us. I worry more about what we’re going to do when our son leaves school than just about anything else.

      Private, non-profit groups are also very active around us. Again, though, it mostly revolves around kids. State budget cuts and the economy are turning the screws on a lot of these groups and I worry that their help won’t be available in 10 years when my son is an adult and will need them more if he is going to have any chance at living independently from us.

      It’s a shame that we have to rely on patchwork support at best and virtually no support at worst. If you do come up with an answer, please post it here.

    • In our efforts to manage care in hopes of managing rising health costs, I fear for patients and their caregivers/families who lack the sophistication or social networking access that allows others to find the care needed. Geography is a critical factor as well as access an academic medical center.

      Community hospitals often lack access to the professionals needed for diagnosis and treatment. Even access to an academic medical center is no guarantee pediatric subspecialists are available. I’ve watched well organized (and well intentioned) parents of autistic children overwhem pediatric neurology services to the detriment of other children with severe neurological conditions.

      Is a population driven medical model flexible enough to adapt to the 10% to 12% of the population who will always fall outside the norm? Will better information give case managers what they need to support effective and efficient individualized care? Or will we still leave those outliers to knit together their own patchwork quilt of care? Or simply drift through the cracks?

    • Thank you great comments

    • Steve,

      Your eloquent Posts about Vincent mirror the experience of a large number of extended families throughout our land with a family member having multiple chronic co-morbities. Given our nation’s heritage for individual survival, our nation’s safety net has produced a miserable existence for the citizens like Vincent and their extended families. At this time, it is unlikely that the quality of Primary Health Care for citizens with multiple co-morbities will change in the next ten years. Given the current state of healthcare reform, it is also likely to worsen as our nation begins to manage the nation’s debt load. Currently, healthcare reform is primarily an economically dominated strategy. This could be very difficult on our nation’s commitment to a safety net for all citizens.

      For one concept to invest in the social capital for true reform consider: http://nationalhealthusa.net/summary/