Thursday, December 20, 2012

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.

Tuesday, December 18, 2012

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.

Tuesday, December 11, 2012

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