I have been an advocate all my life. Now, as grandfather and caregiver of two beautiful granddaughters with rare and long-term chronic complex disorders, I find myself utilizing my skills to advocate for them. My task now is no different from when I was advocating and strategizing for my clients. A professional advocate, if worth their salt, knows that achieving goals for their client is incremental; and that resources required to achieve those goals come from a limited pool. That being said, your success is immensely enhanced, if that which you seek, has universal application for the all other claims for those same resources. You also become acutely aware of whether or not your goals are achievable given the policies and/or the economic climate that exist at any given time.
I am advocating for resources that come from funds allocated for health care. More specifically, I am seeking resources for the pediatric population that come into this world with a rare and/or complex disorder that requires years, if not a lifetime of long-term chronic complex care. These children and their families are perfect examples of the single biggest health care problem: super- utilizers.
Patients who accumulate large numbers of ED visits and hospital admissions that might have been prevented by inexpensive early intervention and primary care–are a relatively small group, yet they account for the majority of Medicare spending, CMCS said in an informational bulletin issued this week. According to CMCS:
- · Five percent of Medicaid beneficiaries account for 54 percent of the program’s total expenditures
- · One percent account for 25 percent of the program’s total expenditures
- · Eighty-three percent of the top 1 percent of users has at least three chronic conditions
- · More than 60 percent of the top 1 percent has five or more chronic conditions
The rare and complex pediatric population take up a huge chunk of the time and resources of children’s hospitals:
The care required by medically complex children, approximately 0.5 percent of all children in the United States, accounts for 15 percent of child health costs annually. In children’s hospitals, patients with congenital and chronic health conditions account for 60 percent of admissions, 70 percent of patient days and 75 percent of costs.
Hence there is universality to their need that is shared throughout health care and that is: they use enormous resources. However the forces currently in effect seek to reduce emergency room visits, reduce admissions and length of stay, and yet only marginally increase the funds to achieve the ends desired and those funds are directed to managing and coordinating care; to which the overwhelmed and frustrated caregiver says: managing what? The pediatric caregiver says “I can’t find a pediatric nurse even with a fistful of money”.
At the same time demographic forces are pushing about 3 million baby boomers per year into the over sixty-five crowd; and as the population gets older they in turn need care and no longer give care; they add to the complex chronic care problem and therefore add to the ER and admissions problem; statutory changes add to the demand by enrolling formerly uninsured; they arrive, having postponed prior necessary medical needs and add to the complexity of care.
While this is happening, payment systems are being squeezed due to inability/unwillingness to fund the increases in medical costs; hospitals, already facing slim margins must adjust to the squeeze of managed care and value based care payments and the pressure of inflation. In the interests of survival they are driven to focus on practices and procedures that deliver the best margins; require little in the way of ER usage; less chance of readmission; less discharge planning; and little chance of long-term complication. I am not convinced that the payments per member per month come close to being enough incentive to enhance long-term complex chronic care.
Have we legislated for ourselves an impossible task: reduce ER visits and admissions in the face of growth of rare and long-term chronic issues in children’s hospitals; tidal wave shifts in demographics as baby boomers become elderly; legislative increases in the demand population through broader universal insurance coverage? The answer is maybe yes and maybe no, and that depends upon your expectations. I expect that the shift in burden will be from the medical system to the medical home and I don’t mean the statutory medical home. If the shift puts greater burdens upon caregivers and parents, without the infrastructure and funds to educate, train, supply and support them, the resulting effect will be to increase demands for ER visits and increase admissions. In sum it will fail.
If we really want the outcomes we desire we will put more resources into the real medical home: and that is home sweet home, where the care is given. Recent studies indicate that 50% of it is advanced nursing skills. We must study and learn from those caregivers. In fact, it is the 3rd largest category of health care and deserve a representation at the policy table commensurate with their size. health care leaders and insurers should wake up to the fact that the caregiver world has the greatest investment in outcomes and have earned a position at the Board tables that rise far above their current token numbers.
Kris Olson says
Well said, Ed. I am the 63 year old caregiver to my son, age 28, who has Rett Syndrome. He has multiple chronic conditions, which probably goes without saying since he is a male with this disease. He is a ventilator dependent quadriplegic. He has the most amazing expressive eyes in the world. I am fortunate to be in excellent health. I am also very fortunate and thankful to have been trained and supported by the Pediatric Ventilator Team at the University of Michigan Hospital. The UM team is determined to turn out competent confident parents/caregivers! I have many skills sets and feel comfortable handling most anything in the home environment. Nate has a mediport, and when necessary I collect a sputum sample and can access his port to deliver I.V. drugs at home. We just got a brand new cough assist machine (thank you Blue Cross for approving this upgrade!) and I look forward to seeing improvement in his respiratory disease.
Anyway, I guess I wanted to share that with the right training and support, ER visits and hospital stays can absolutely be avoided.
(Additional thoughts – we do NOT have nursing care in the home by choice. We DO have a plan in place with mental health and Nate is approved for care in the home should that become necessary. I am well aware that I am a slip and a fall away from disaster!)
Pamela Holtzclaw Williams JD, PhD, RN University of Arkansas for Medical Sciences says
Ed, Glad you found a forum for your writing. I am working with a Genetics Clinic in Arkansas where our focus with the patient community is to develop a medical home for patients living with genetic conditions. We are using a community based participatory research partnership (approach) to the research that will support medical home formation. We intend to study how and why a medical home provides higher quality, patient centered outcomes- better than the present status quo. I hope that you are pursuing research avenues to prove the improved outcomes with a “real medical home”. Research findings then informs policy. Advocacy gets us a certain distance to a goal, but advocacy armed with research findings is the most persuasive way to create change in healthcare delivery. Best of luck up there, Pamela Holtzclaw Williams JD, PhD, RN University of Arkansas for Medical Sciences
Hi Ed: Are you aware of a program through the New York State Department of Health called “Care at Home”? Here is a link to the Parent Handbook for this program. I hope it might be a useful resource for you.