Wednesday, August 11, 2010

The Billy Williams Chair

I want to write a little bit about donations. I am prompted because a mom who I haven't heard from in a couple years stopped by my office recently and made a donation of equipment that her son used. He died a couple years ago, and the mom (in her words) was able to finally sift through some things in the basement and decided that the therapist would make good use of the items with other children and families.

I can't write about this particular situation yet because to be honest it is too raw and too recent.

Instead I want to write about The Billy Williams Chair. I can write about this chair now without crying, mostly.

Billy had a full 18 year old life before I ever met him for his final year or so. He was a high school student, a singer in the chorus, a big brother, and so much more. Unfortunately, when I met him he was stuck in a hospital bed in a pediatric intensive care unit for most of his time. Billy had transposition of the great arteries, which means that the important vessels in his heart were connected to the wrong places. He had surgery to correct this as an infant, but he had long term complications including pulmonary hypertension that contributed to congestive heart failure. He had a few surgeries over time to help his failing heart, each complicating his condition more and more until he was at the point when I met him. He had a permanent tracheostomy and could not tolerate a Passy-Muir valve so all of our communication was through signing or lip reading or writing or wild gesticulation. It was really frustrating for Billy, and I think it was especially hurtful because he loved to sing.

Multiple surgeries and the need for long term mechanical ventilation kept him bedbound. Poor fluid balance complicated his mobility and range of motion and physical activity - which of course cyclically impacted his fluid balance. The ICU team was incredible in all that it did to manage the complexity of his medical condition - and although I am no expert in such matters it is difficult to imagine that they could have tried harder.

OT and PT were integral team members in the pediatric ICU, and we saw Billy on a daily basis to help him move to whatever his tolerance was, to have him sit up, to have him participate in simple self care activities. Every day we interacted with his mom or dad, and we frequently saw his little brother and sister as well. They were just an incredible family, and they were trying to cope with the most impossible of situations. So many things went wrong because of the medical complexity of his situation - and I just don't remember them complaining. They were the most supportive family I have ever met.

Humor abounded and there was an amazing bond between Billy and his mom. I especially remember the time that his mom made a sign that said "Mulder and Scully! I am in here! Please get me out!" Perhaps the only way to make sense of his impossible situation was to imagine that he was an X-Files case.

I have written before about the futility of working with children who are terminally ill. Billy was terminally ill, but no one really said that out loud. Or maybe they did, and I wasn't listening. It was a hard situation. The doctors kept pushing to fix things, because that is what doctors do. We did the things that the doctors told us to do, because it was a hospital and that's how things work. The ICU team wanted us to maintain Billy's range and mobility throughout all these medical trials - but it was a losing battle. In particular, fluid retention and long term bedrest was causing contractures of the hamstrings so they asked us to use dynasplints which did not work and then progressive serial casting. After one cast application I got a beeper call after hours because Billy just couldn't tolerate the stretch from the cast and it had to be removed. It was all just matter of fact to Billy - but I will never forget the way that he told me with his eyes that the cast was not comfortable and he just couldn't take it any more. That night I removed the cast, and then sat with him for an hour watching The Incredible Mr. Limpet. I couldn't think of any other way to make sense of the therapy at 10pm than to sit with him and watch TV and laugh a little into the lonely night of the ICU.

Somewhere along the way we got Billy a wheelchair. It was a monstrosity of a wheelchair because it needed to have elevating removable legrests, a solid seat, a solid and reclining back, and room underneath it for a portable ventilator. It may have been the bulkiest wheelchair I have ever worked with, but it met his need, and got him out of the bed at least a little. I think he hated it, or maybe he just hated that we were coming down and trying to drag his very frail body out of bed a couple times a day. It was probably all just part of the X-Files to him - more equipment that looked more like it belonged on an alien spaceship that he was being poked and prodded and strapped into.

I don't precisely remember the day when Billy died, but I remember writing the discharge note in matter-of-fact medical terms that grated against every sense of moral order that was in my brain. I remember his wake vividly though - with the Phantom of the Opera music that he loved so much playing in the background and the wonderful picture boards. I especially loved the picture of him with Vulcan ears on when he was younger. It was priceless. I mourned for Billy, and mourned that I did not know the Billy who got to smile like that and wear Vulcan ears and sing. I never heard his singing voice.

I mentioned that his family was amazing, and they were amazing to the point that I can't even explain my feelings. I have no doubt whatsoever that his younger brother and sister have grown into amazing young adults - because that is just the way that family was. Billy's mom donated his wheelchair to the therapy department and we used it many times with other adolescents who needed that kind of large and bulky and heavy duty wheelchair that could accomodate a portable ventilator. The family placed a simple placard on the back of the headrest that said, "In loving memory of Billy Williams." The headrest was curved and the placard was somewhat stiff with an adhesive back. Every time I saw that placard I pushed on it hard to make it adhere better to that chair so it would never come off.

The chair became known throughout the hospital as "The Billy Williams Chair." It was something that the PT and I initially used to describe the chair, and it pleased me immensely to be sitting in a planning meeting and to hear a floor nurse say, "Do you think that we could use The Billy Williams Chair for this child?"

I left that position over ten years ago now, and I doubt that the chair is still being used. I doubt even more that the stiff placard stayed on that curved headrest. More importantly though, I think it is a good time for me to talk about The Billy Williams Chair so that families know that when something gets donated it really does get used - and even when something is done being used and even when the adhesive is off of the memorial placard - that the memory of amazing people like Billy and his family is stuck in my mind forever.

Monday, August 09, 2010

The erosion of special education services in New York State

Money is tight and the new method for getting budgets passed in the NY State capital is to cram everything into emergency budget extensions that the public never gets to see or comment on.

The other method for cost savings is to make rule and regulatory changes that have a public comment period - but it does not matter what the public says because the rules are going to be passed no matter what.

Early intervention providers saw this earlier in the year when they experienced a 10% rate reduction for most home and community based visits. This effectively limits the reimbursement to therapy providers and is driving a large number of professionals out of the delivery system. A mandatory 10% pay cut is significant, and although there were public hearings about changes to the rates and other delivery issues it really did not matter. Fewer providers means fewer services provided - which is precisely what the bureaucrats intended.

A new round of regulatory changes is on the horizon, this time taking aim at children who require speech therapy services and any children who are in integrated classrooms. The new regulations remove all minimum service requirements for speech therapy and they also allow for more children to be crammed into special education classes. Children who have autism are specifically identified as having their minimum services slashed.

The problem with all these changes is that there is no evidence that indicates this is the best way to reform or modify the system. This is pure knee-jerk reaction to a budget shortfall and has nothing to do with best practices. So, as we all continue to pay for waste, fraud, and abuse throughout the system - clueless bureaucrats and politicians sit in their ivory towers and make random cuts to budget lines that they probably don't have any ability to even understand.

The bottom line on all of this is that many schools are quickly becoming a de facto joke of a place for service provision. In most places the inability to effectively manage will cause you to be fired - will we finally apply this standard to the huckster administrators and career politicians who are pretending to manage our educational system?

My advice to parents is to monitor your special education services closely. The system is in a rapid free-fall, but you won't see it reported on much because it is happening in small bits through regulatory and rule changes. Anything discretionary (like summer and after school programs) are all being slashed. Staffing is being reduced and more children are being placed in classrooms. Reimbursement to providers is being cut. Children who previously received services are being declassified.

Families who have resources will use them to seek services privately - but those who do not have resources will simply suffer.

Some of this is a reflection of a tight economy. More of this is related to the New York State Plan Amendment that places vast new restrictions and requirements on Medicaid funding for special education services.

In all fairness, there is indeed a price for the fraud and abuse that has existed in this system for many years - but you do not solve the problem with fraud and abuse by failing to address the real problems and instead placing children in the cross hairs of your budget slashing methods.

The people in power will point to Medicaid fraud and say that budget shortfalls are not their fault.

They are hoping that you won't notice that they are trying to solve the problem at the expense of children who have disabilities.

Tuesday, August 03, 2010

Child health professionals need to do more to help parents

A sad story has been in the news recently about a parent who allegedly murdered her children who were diagnosed with autism. 911 tapes and other evidence indicate that the family was having difficulties coping with the diagnosis and care of these children.

Several years ago I put some thoughts together regarding efforts I wanted to make in my own private practice to support mental health of parents. I based my original ideas on Leading Health Indicators of the Healthy People 2010 project. Perhaps it is time to assess our progress and lack of progress on these indicators. I understand that Healthy People 2020 is due out this year - and we need to remember that it is not enough to just talk about how these issues are important. We need to actually DO THINGS that will help to improve the health of children and families.

Here were my thoughts on this subject five years ago. I am afraid that if this case in the news now is any indicator that we still have some work to do:


Parents who have children with disabling conditions are at an increased risk for psychopathology as compared to parents with typically developing children (Fuller and Rankin, 1994). Parenting occupations are more complex and challenging when children have disabling conditions; increased demands on parents contribute to changes in normal parent-child interactions (Anastopoulos, Shelton, DuPaul, & Guevremont, 1993). In addition to the directly negative impact that stress causes to the parent, parental stress has been associated with increased child behavioral problems and intergenerational psychopathology, including depression (Baker, 1994; Ellenbogen & Hodgins, 2004).

Many child-centered and parent-centered factors may have a negative impact on development of normal parent-child interactions. Parent-centered factors include emotional and mental health needs that are unmet or poorly addressed by health professionals that can impact interactions. Although research shows that parents are not always able to follow through on professionals’ recommendations, it is known that they appreciate helpful suggestions for activities that promote child development or make caregiving easier (Humphrey & Case-Smith, 2001, p. 123). Shearn and Todd (1997) identified that there are long-term implications when a child has a disability because the parenting role is extended beyond typical expectations. They also state that the expectation of professionals contributes to levels of perceived stress, indicating that the parent’s needs are not being consistently met.

Several occupational therapy authors have also discussed the particular stresses upon parents whose children are disabled and the impact this has on the orchestration of their occupation (Esdaile, 1993; Primeau, 1998; Larson, 2000; Segal, 2000, Cronin, 2004). This literature has added significantly to occupational therapy’s understanding of parenting occupations through narrative analysis.

Relationship to Leading Health Indicators

According to Healthy People 2010 Leading Health Indicators (USDHS, 2002), mental health is defined as “a state of successful mental functioning, resulting in productive activities, fulfilling relationships, and the ability to adapt to change and cope with adversity. Mental health is indispensable to personal well-being, family and interpersonal relationships, and one’s contribution to society.” Mental health was chosen as a Leading Health Indicator because conditions such as major depression are the leading cause of disability among adults in developed nations such as the United States (USDHS, 2002).

Objective 18-9b of the LHI specifically targets the recognition and treatment of depression, which is reportedly the most unrecognized and untreated mental illness cited in the report. Depression is a leading cause of mental illness in women, affecting them at a frequency twice greater than men (Weissman & Klerman, 1992). Occupational therapists often interact with mothers as the primary caregivers to children, making awareness of maternal mental health issues particularly important for practice.

Developing wellness programs that facilitate parental mental health is critical in supporting the objectives of the Healthy People 2010 initiative. Little progress was made toward Healthy People 2000 objectives that focused on controlling stress and seeking treatment for depression (USDHS, 2002). The Centers for Disease Control and Prevention statistics (as cited in USDHS, 2002) indicate that there was a slight decline in the proportion of nurse practitioners who typically inquire about the parent-child relationship and a greater decline in the numbers of practitioners who ask about affective functioning in their adult patients at all. This indicates that an important need is present regarding parental mental health that is not being met.

Contextual influences

The Healthy People 2010 report (USDHS, 2002) provides strong political contextual support for programs that facilitate parental mental health and prevention of illnesses including depression. The stresses of everyday life are a challenge to all parents and all children, and the fast-pace (tempo) of modern life has a negative impact on society’s collective ability to meaningfully interpret and experience normal occupations (Clark, 1997). This fact underscores the importance of addressing the mental health needs of parents whose children have disabilities. Killegrew (2000) identifies that broad ecocultural and contextual factors including perceived time availability, child-rearing strategies, and socioeconomic capital were more likely to dictate family routines than a child’s skills or abilities. Therefore there is substantial benefit to be gained by providing contextual interventions that promote and support parental mental health and wellness. Additionally, as parents of children who have disabilities have high levels of stress as measured on standardized instruments, parental stress management should be considered as an integral part of all occupational therapy programs for children who have disabilities (Esdaile & Greenwood, 2003).

One potential contextual obstacle to consider is that some research indicates that parents may be hesitant to discuss their stress and associated depression for fear of being reported to child welfare agencies (Heneghan, Mercer, & DeLeone, 2004). However, these researchers also indicate that this effect is partially mediated by a trusting relationship with the practitioner. Despite this, parents appreciated support that they did receive, even when it was only in the form of general written information and resources. These findings provide important contextual information to consider in developing an occupation-based program that supports parental mental health.

Existing programs and strategies

The principles behind the inclusion of parent education and support into an overall occupational therapy program was described by Cohn (2001), who discussed the benefits of waiting room experiences of parents while their children were receiving occupational therapy. Case-Smith & Nastro (1993) described dissatisfaction with occupational therapy when parental needs were not being met; they suggest that open communication and consistency are important factors to consider in promoting parental satisfaction. Despite professional calls for a focus on the occupation of parenting (Llewellyn, 1994), there is not much documentation in the occupational therapy literature regarding use of parenting skills as a therapeutic means. Hanna and Rodger (2002) reviewed the occupational therapy literature and identified that the available evidence regarding the efficacy of occupational therapy intervention for parent training and collaboration is limited. However, research completed outside of the occupational therapy profession supports the use of parent training programs for facilitating parental mental health, particularly in the short term and when the groups are offered to mothers (Barlow & Coren, 2003).

Relation to health promotion model

An ecological model as described by Gorin (1998, p.21) incorporates the interrelationships between parents and their environments that lead to stress and may threaten mental health. This type of model considers the environment from a systems perspective, including institutional, social, and cultural factors. Bronfenbenner (1977) suggests that development occurs within a context or ecology. The family’s microsystem, including the local community institutions such as school, religious institutions and peer groups, are all critical influences on health and well-being. The interaction of these various systems creates forums for development to occur, or not occur. These external factors may constitute significant barriers for parents of children who have disabilities; this makes the ecological model most appropriate to consider for any program proposal.

As an example, institutional factors could include local influences regarding availability of resources in a community and even the availability of professionals to provide services. Specifically, local municipalities all interpret IDEA in accordance with their own district policies and procedures. Navigating local special education systems can be highly frustrating to parents and the associated stressors related to obtaining appropriate services for a child who has a disability can be a drain on mental health.

OT centered wellness intervention

Based on the evidence presented herein, there is a strong need for specific attention to be offered to the mental health of parents when their children have disabilities. Generic support has always been a component of occupational therapy intervention in the form of verbal discussion regarding child progression in treatment, or to offer suggestions for a home program. It is now evident that parents need more directed efforts to support their mental wellness. Robust parent education initiatives for all families that receive services is needed.

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