How far have we come in preventing disabilities in Preemies?

The answer is mixed, according to an article in Disability Scoop, "Despite Advances, Many Preemies Still Face Severe Disabilities" by Michelle Diament, 12/11/12.

Neither one of my sons' disabilities were caused by prematurity. Although they both survived because of care given to them in intensive care neonatal nurseries, that care was not enough to spare them from lives with profound mental and physical disabilities.

After Danny was born in 1976, I used to see photographs and news stories about premature infants and others who had survived and thrived after overcoming extremely difficult circumstances at the time of birth. I noticed one day at the hospital where Danny was born - I think we were making one of our treks to see his orthopedic surgeon - a bulletin board full of photographs from a recent reunion of "graduates" from the neonatal intensive care unit. Hmm?, I thought. We weren't invited. (You see how petty I can be when it comes to a perceived insult to a child of mine.)

Among the children at the reunion, not one was in a wheelchair. One wore glasses but otherwise there were no visible signs that any of them had significant disabilities. In the crowd I hung out with, mostly parents whose children were similar to Danny, many of those children had done time in the same neonatal intensive care nursery. I have no idea if there was any deliberate plot to exclude children like mine from the reunion party - maybe their parents were too tired or just didn't feel like celebrating. But since then, I have always been somewhat skeptical about claims that we are making tremendous progress in preventing and treating severe disabilities.

The Disability Scoop article sites two British studies. One concludes that, "Survival of babies born between 22 and 25 weeks’ gestation has increased since 1995 but the pattern of major neonatal morbidity [the incidence or prevalence of disease in a population] and the proportion of survivors affected are unchanged. These observations reflect an important increase in the number of preterm survivors at risk of later health problems."  Another, in comparing outcomes between 1995 and 2006, concludes that "At follow-up the findings are mixed: there is some evidence of improvement in the proportion of babies who survive without disability, an improvement in developmental scores, and a reduction in associated neuromorbidity (seizures and shunted hydrocephalus), but no change in the rate of severe impairment."

Overall, there are more preemies who survive without any disability, and good for them, but the proportion of those with severe disability has remained the same.

Dual Eligibles - Why can't Michigan be more like Ohio?

Ohio, along with at least 25 other states including Michigan, has developed a plan to coordinate care for people who are eligible for both Medicare and Medicaid. Michigan's plan has not yet been approved by the Centers for Medicare and Medicaid Services (CMS), but CMS has approved Ohio's plan. Michigan's draft plan so far covers all populations in the state, including people with developmental disabilities, and is more ambitious and radical in its approach. The final plan will be reviewed by the Michigan legislature before it is submitted to CMS.

Ohio, wisely, I think, has limited its plan for Dual Eligibles geographically to 29 of its 88 counties. It will not include people residing in Intermediate Care Facilities for the Intellectually Disabled (ICFs/ID) or people who receive services through a Medicaid waiver (such as Michigan's Habilitation Supports Waiver for people with DD). Anyone will be able to leave the program at any time.

This information comes from the Capitol Insider, 12/17/12, a publication of the National Arc:

Medicaid – News for individuals who are dually eligible for Medicare and Medicaid in Ohio

The Centers for Medicare and Medicaid Services (CMS) negotiated the third Memorandum of Understanding (MOU) with Ohio to test a new model for providing person-centered, coordinated care to individuals who are eligible for both Medicare and Medicaid (dually eligible). Ohio’s demonstration will cover individuals who are dually eligible in 29 counties and will begin in September 2013. Over 100,000 dually eligible individuals will be eligible to receive their health care and long term services through managed care. Individuals with developmental disabilities, who reside in intermediate care facilities for individuals with intellectual disabilities (ICFs/ID) or receive services through a Medicaid waiver, will not be eligible for the program. The companies chosen by Ohio to manage the program are Molina Healthcare, Aetna, UnitedHealthGroup, the Buckeye Community Health Plan run by Centene, and an alliance between Humana and CareSource, a non-profit health plan. People will be able to leave the program at any time or choose another plan. Ohio follows Massachusetts and Washington in negotiating MOUs with CMS.

Here is more information on Dual Eligibles in Michigan.

2012 Holidays - Enjoy and Endure!

The Thanksgiving through New Year's day holidays at my house are often a time of crisis. So far this year, Grandpa landed in the hospital for a few days, then I came down with a contagious stomach flu which I shared with Grandpa and my husband, the front wheel of Danny's wheelchair froze up and threatened to fall off, and we still have a week to go until Christmas. One year on Christmas Eve, my husband brought Danny home in the van and then proceeded to launch him into the garage without the benefit of the lift being down. Danny was OK and enjoyed spending Christmas Eve in the Emergency Room, although my husband was simultaneously wracked with guilt and fuming because of the long wait in the ER. I know some families with medically involved children who rarely celebrate a holiday in any way that doesn't involve a life-threatening crisis, a seizure, or plans that have to be changed at the last minute to accommodate whatever emergency comes their way.

Insofar as is possible and practical, enjoy and endure the holidays.

Holiday edition of A Different Path newsletter

A Different Path newsletter has issued a holiday edition with

• Success stories: Mattias, who has Asperger's Syndrome, thrives in a Cordon Bleu cooking class in Peru; Camela, the only Down Syndrome child at a local Catholic school, begins her second year; and an Eagle Scout with autism will be graduating from high school in 2013.
• Advice and support: TalkAbility classes to foster communication in special needs children; Assistive Technology assistance from the Ann Arbor Center for Independent Living; and  heartfelt personal stories from parents of children with special needs.

A Different Path could use financial help right now. Tax deductible donations should be sent to: Different Path, PO Box 8276, Ann Arbor MI  48107-8276.

Contact the editor of A Different Path at beestange@comcast.net .

Thanksgiving Gifts

Medicare/Medicaid Eligibles: The Kaiser Report on State Plans and Michigan's Plan so far

Way back in 2011, Michigan was one of fifteen states to receive a contract with the federal Centers for Medicare and Medicaid Services (CMS) to develop a model to integrate the care of people eligible for both Medicare and Medicaid. (CMS is the federal agency that regulates and oversees Medicare and Medicaid.) Michigan was among the first 15 states to receive funds to develop a plan. By July of 2011, 26 states were participating in planning. A Report from the Kaiser Commission on Medicaid and the Uninsured from October 2012, summarizes and provides data on the plans from 26 states. 

Michigan's Dual Eligibles plan would affect about 200,000 people who are elderly, mentally ill, or physically or developmentally disabled and poor.  The purpose of the plan is to reduce costs and improve care. But the premise on which federal and state governments justify the idea that the share of spending can be reduced for the Medicare/Medicaid eligible population is  questionable. As stated in the introduction to the Kaiser Commission Report, "Dual eligible beneficiaries are among the poorest and sickest people covered by either Medicare or Medicaid and consequently account for a disproportionate share of spending in both programs." How is the share of spending disproportionate after one accounts for the characteristics of this population?

I think it is safe to assume that medical and hospital costs are generally too high and that we pay too much for prescription drugs and  medical devices and equipment. But almost half of the Medicare/Medicaid population are people under 65, many of whom receive Medicaid-funded mental health services through Michigan's Community Mental Health system.  Cost increases in areas covered by CMH have been relatively stable: 

"Per capita health care costs in the US increased by more than 5% per year between 2002 and 2009, with a total increase of 57% during that period. The public mental health system has seen an increase of approximately 2.2% per enrollee per year in that same period." (from the MACMHB Guide to Integrated Care for Dual Eligibles)
 
Finding ways to control the high cost of medical care is laudable, but the fear by individuals and their families who receive services through the CMH system is that reducing the costs of mental health services can only be achieved by reducing the number and quality of services available and by cannibalizing existing programs for people with developmental disabilities and mental illness to fund  services to other under-funded populations.

Other objections to the plan include:

The use of state-wide standardized assessments to determine needs and identify services is contrary to the idea of Person-Centered Planning. Assessments should be used by the PCP team to determine needs and services, but assessments alone should not be the determining factor. The state plan for dual eligibles reduces the PCP meeting to a little get-together to ratify the decisions that have already been made through the assessment process.

The proposed revisions to the Dual Eligible Plan's  "Care Bridge" give more control over assessment and determination of services to an Integrated Care Organization, ICO, a Medicaid health plan, thereby giving decision-making power to the medical system of care rather than the mental health system. While locally controlled Community Mental Health agencies may continue to play a role in assessing and determining needs of people with developmental disabilities, they do so under contract to the ICOs, organizations  that have little experience with the populations served by the CMH system. Case management services may or may not be provided by CMH agencies, further diminishing the role of publicly controlled local CMH agencies in implementing and overseeing the provision of services. 

Key Questions 

Overall, according to the Kaiser Commission Report, there are crucial questions that remain to be answered regarding how the 26 state's will implement their plans.
 
(Page 16) As CMS continues to review the 26 states’ proposals and finalizes MOUs [Memoranda of Understanding] to implement demonstrations in selected states over the coming months, attention should be given to several key questions, such as:

• How will beneficiaries be notified about the demonstrations and enroll and disenroll?
• How will Medicare and Medicaid contributions be calculated, risk-adjusted, and adjusted over time?
• What will the source(s) of savings be, and how will savings be shared among CMS, the state, plans and/or providers?
• How will the demonstrations affect access to home and community-based services?
• How will medical necessity determinations be made, and how will beneficiaries appeal decisions with which they disagree?
• Will beneficiaries be able to retain their current providers and services and access an adequate provider network?
• How will plans and providers meet the needs of and provide reasonable accommodations to beneficiaries with a range of physical, mental health, and cognitive disabilities?
• How will quality be measured, and how will the demonstrations be monitored and evaluated?
• To what extent will the specific standards that health plans must meet to participate in the demonstrations vary from existing Medicare Advantage and Medicaid managed care requirements?
• How will stakeholders continue to be engaged throughout the design and implementation process?

These are not trivial questions that must be answered. But of course, once a plan is approved it's not set in stone, is it? Well, apparently it is. This is from pages 18 and 19 of the Kaiser Commmission Report:
 
CMS’s financial alignment models for dual eligible beneficiaries are based on the Center for Medicare and Medicaid Innovation’s (CMMI) new § 1115A demonstration authority created in the ACA [the Affordable Care Act]. The following questions and answers explain the scope of the Secretary’s authority and the process for testing new payment and service delivery models under § 1115A. 
...

What is the scope of the Secretary’s [of Health and Human Services] § 1115A waiver authority?
 
The law [the Affordable Care Act] prohibits administrative or judicial review of the Secretary’s selection of models, organizations, sites, or participants; the elements, parameters, scope, and duration of models; determinations regarding budget neutrality, termination or modification of a design and implementation; and determinations about the expansion and scope of models.

Wow! A law that is outside the reach of administrative or judicial review? That's a chilling notion. This means the plan will have to be absolutely perfect before it is finally submitted to CMS by the state. What could possibly go wrong?

St. Louis Center "Fitness for Life" Program

St. Louis Center is a residential community for children and adults with developmental and intellectual disabilities located in Chelsea, Michigan, about 15 miles west of Ann Arbor.

St. Louis Center began offering a "Fitness for Life" program  this fall for qualified residents of Chelsea, Dexter, Grass Lake, Manchester, and Stockbridge, Michigan. The program is available to people with special needs. It's purpose is to increase the physical fitness level of participants, thereby increasing their capacity to perform normal daily activities more safely and independently.

According to an article in the Journal Register:

Caitlin Deis, a 2001 graduate of Chelsea High School with a bachelor's in psychology from Alma College, was hired to become the part-time fitness specialist in September 2011 and was offered the position full time in June 2012.

She had this to say about the program:

“What’s unique about our approach, is that if someone is afraid of using a free-weight to build arm strength, we might use a household object like a water bottle instead. Several of our participants don’t like standard exercises, but most like to dance, and we’ve even introduced them to yoga as a fun way to stretch and increase their flexibility and core strength. We’ve already experienced tremendous success with several of our residents, who have lost as much as 15-20 pounds. One young man here has even dropped 60 pounds through regular exercise and a change in his diet.”

For more information on the program schedule and fees, see the SLC Web site or contact Caitlin Deis, Fitness Specialist, by phone at 734-475-8430 or by email at wellness@stlouiscenter.org  .