Saturday, December 24, 2005

An Analysis of Continuing Competence Regulation of Occupational Therapy in New York State

Goals of the policy

Regulation of continuing competence is an important current issue for the public consumers of occupational therapy services in New York State. Two bills were introduced by New York State legislators in 2005 to address this issue. Assembly bill A.5160 and Senate bill S.1388 are identical companion bills that establish requirements for occupational therapists and occupational therapy assistants to complete continuing education as part of their triennial license renewal. The proposals also mandate continuing competency fee be paid to help support the administration of this additional requirement.

This proposed policy is being decided in the New York State Legislature and has been referred to the Committee on Higher Education for their review and feedback. No legislative action was taken on either bill during 2005.

There is no uniform licensure or continuing competence requirement among the states. Forty-one jurisdictions currently have continuing competence requirements, ranging from a minimum of six hours of continuing education to a maximum of twenty hours (NBCOT, 2003). New York State does not currently have any continuing competence requirements beyond completing an application and paying a renewal fee.

The primary purpose of policies that regulate continuing competence requirements of health care practitioners is to protect the public. Birkland (2005, p. 144) states that these types of regulatory policies “assure professional oversight over the activities of professionals, who must be trained and regulated to assure competent service to their clients.” The Institute of Medicine (2003) states that “health professionals are not being adequately prepared to provide the highest quality and safest medical care possible, and there is insufficient assessment of their ongoing proficiency.” This sentiment is also repeated by the Citizen Advocacy Center (2004) that states “the oversight system has lost out on a major opportunity for quality assurance in health care delivery and thereby failed the public.” This debate contributes to the urgency for New York State to improve the regulation of occupational therapy practice.

Relevant actors & agencies

The essential and relevant actors in the debate surrounding professional competence are the occupational therapy practitioners and the public who consumes occupational therapy services. However there are many other stakeholders in the process, all of whom are involved for different reasons.

The New York State Legislature is interested in this issue because they are charged with writing the laws that are designed to protect the public. Similarly, the New York State Board of Occupational Therapy is responsible for writing regulations and implementing the laws that are passed. These groups have a legal responsibility to the consuming public to ensure that occupational therapy services are delivered in a safe and appropriate manner.

The National Board for Certification of Occupational Therapy has a certification process (initial and renewal) that provides a national model for jurisdictions to consider using. After successful completion of the initial certification examination, ongoing professional development is required every three years. These requirements are designed to supplement state regulatory requirements toward the end purpose of serving the public interest (NBCOT, 2003).

The American Occupational Therapy Association’s Representative Assembly passed a motion to establish the Commission on Continuing Competence and Professional Development in 2002. This commission was established to “offer strategies that support [practitioner’s] pursuit of the competency requirements outlined by state licensing boards and NBCOT and to encourage use of the standards developed by AOTA” (Moyers, September 30, 2002). AOTA has specified that it will focus on the area of competence as opposed to competency. Competency purportedly implies capacity to perform professional responsibilities and competence implies the development of that capacity through continuing education (Moyers, September 30, 2002). This nuanced distinction is supported in the literature as referenced by Moyers but it seems to be lost in translation on a functional level: the terms competency and competence are used interchangeably by other stakeholders (Mayhan, Holm, & Fawcett, 1999; The Citizen Advocacy Center, 2004). The proposed New York State legislation regulating continued competence for occupational therapy practitioners also does not make the distinction between competence and competency.

Policy Theories

Development of policy can be best understood through frameworks or models. The Advocacy Coalition Framework (Birkland, 2005, pp. 226-228) describes the process that is occurring in New York State related to the proposed continuing competence regulation. The Advanced Coalition Framework states that interest groups are organized and involved in policy development. These groups debate, compete, and eventually compromise around a set of shared values. On the state level, the New York State Occupational Therapy Association provides member input to the State Board for Occupational Therapy regarding the proposed legislation. Some of those suggestions and feedback were important for writing the bill that was submitted in the New York State Legislature and Senate. This activity occurs in the foreground of the larger national debate about continued competence and the activities of national groups like AOTA, NBCOT, the Institute of Medicine, and the Citizen Advocacy Center.

Policy Tools or Instruments

Policy tools are the methods used to create a desired outcome of a policy goal. As stated above, the primary policy objective is protection of the public by ensuring competent occupational therapy practice. There are several relevant policy tools or instruments that will facilitate the implementation of this policy. Birkland (2005, pp. 174-176) identifies law and suasion as types of policy tools; these specific tools should be considered when analyzing policies related to occupational therapy competence.

Law is the primary method for facilitating this policy outcome. The proposed occupational therapy continuing competence requirements will be in effect 180 days following their passage into law. The New York State Board for Occupational Therapy will develop specific regulations for occupational therapy practitioners related to implementation of that law.

Suasion is another method for facilitating policy outcome and is closely related to law. Suasion is a hortatory tool that is backed by inducements and penalties. Inducements are represented in the form of continued licensure and sanctions are represented in the form of penalties including loss of licensure.

Historically, state licensing boards have been slow to develop continuing competence requirements (Citizen Advocacy Center, 2004). This contributed to development of NBCOT’s certification renewal program and now most states have adopted some form of this policy tool. The NBCOT certification renewal program continues to serve as a national standard for development of policy tools to protect the public regarding occupational therapy practice.

Analysis

The competence of health care practitioners is a public mandate. The Citizen Advocacy Center report (2004) outlines a history of this debate reaching back into the 1960s. The report outlines a position that health care is increasingly complex and that old methods of regulation and oversight are not applicable to the dynamic nature of modern health care practice. They suggest a five step plan including routine periodic assessment, development of a personal plan, implementation of a personal plan, documentation, and demonstration/evaluation of competence.

Unfortunately, compelling need does not always translate directly into sensible policy. For many years occupational therapy practitioners operated under the assumption of ‘lifetime certification.’ Understanding that this concept did not protect the public, NBCOT developed a certification renewal program. The certification renewal program was hotly debated within the profession and led to a legal confrontation between AOTA and NBCOT (1998) over the right to use the certification marks. Competitive certification organizations were also created (Brown, 2002). These challenges to NBCOT’s certification programs are examples of how policy is debated within the Advocacy Coalition Framework (Birkland, 2005, pp. 226-228). This confrontation was a major obstacle for development of policy governing the competence of occupational therapy practitioners.

Shared dialogue and agreement around common values is necessary in order for sensible policy to be developed. AOTA, NBCOT, and the American Occupational Therapy Foundation (AOTF), announced renewed efforts to collaborate on strategic initiatives important to the long-term health and direction of the occupational therapy profession (AOTF, 2004). The working group is called Occupational Therapy Organizational Partners (OTOP) and represents a beginning step toward shared dialogue. Still, several important obstacles remain.

The lack of consensus on terminology is a basic but important obstacle. AOTA makes distinctions between competence and competency (Moyers, September 30, 2002) and is basing a new certification initiative on these definitions (Hinojosa, December 20, 2004). These updated continuing competence standards were accepted by AOTA’s Representative Assembly during the 2005 national conference (AOTA, 2005). These standards will serve as the basis for specialty certification programs (Glantz, May 10, 2004) that may compete with the NBCOT certification. Walker (December 10, 2004) states that laws regarding use of credentials can be confusing to occupational therapy practitioners. If occupational therapy practitioners are confused about credentialing, it is obvious that multiple points of certification have the potential for confusing the public.

Ronnie Hausheer, the former Executive Secretary for the New York State Board for Occupational Therapy wrote a letter to former NYSOTA President Sue Seiler on July 9, 2003. She expressed that “instead of leading the nation, we are lagging behind.” She asked that the state association “exercise their leadership role in creating meaningful requirements for licensees” when proposing changes to the New York State occupational therapy practice act.

New York State is not adopting the NBCOT model or any proposed AOTA model for certification or certification renewal as it relates to the continuing competence bill. However, the proposed legislation is written so that occupational therapists who meet the standards of NBCOT will effectively meet the proposed standards of the New York State legislation. The bill falls short of explicitly requiring NBCOT certification renewal. The New York State proposal will be effective in mandating a certain level of continuing education and will be effective to the degree that this continuing education can contribute to practitioner competence.

Mandated continuing competence laws will have a direct impact on occupational therapy practitioners. The current requirements center on continuing education, but there is increased dialogue within health care professions about the potential role of re-assessment through performance on proficiency examinations (Andrews, 2003). Canadian occupational therapy regulators are now discussing the merits of periodic re-assessment through examination (James, 2005).


Action Plan

The proposed New York State legislation should be supported, but it could be strengthened through full alignment with a national model. A national model for continuing competence promotes the integrity and value of occupational therapy credentialing and has the additional benefit of crossing all jurisdictions, regardless of geographical regulatory requirements. This leads to the question: which continuing competence pathway is best?

The NBCOT certification and certification renewal programs provide the most comprehensive competency assurance measures. NBCOT requires academic and fieldwork preparation. Certification candidates must pass the NBCOT national certification examination. Certificants must also agree to adhere to the NBCOT candidate/certificant Code of Conduct and participate in ongoing professional development. Additionally, certification renewal is mandatory to maintain active status as an OTR or COTA.

New York State’s current and proposed requirements already align with the NBCOT certification and certification renewal programs. New York State licensees are required to meet academic and examination requirements. Licensees must personally maintain documentation of continuing education activity and this documentation of continuing education activities must be provided upon request.

As another measure of alignment, the NBCOT and New York State Board for Occupational Therapy share a common purpose of public protection. The commonality of purpose is critical for a cogent policy that will meet the stated objectives.

Occupational therapists in New York State are becoming increasingly aware of the continuing competence debate as the NBCOT certification renewal program has been implemented. Several workshops were provided to New York State Occupational Therapy Association local districts and to educational programs as the NBCOT programs were implemented. These workshops focused on the certification renewal program and specifically on the continuing education requirements of that program. This year a presentation was provided at the New York State Occupational Therapy Association conference. The presentation focused on The NBCOT Certification Renewal Program and proposals for continuing competence requirements in New York State (Alterio, 2005). These presentations have assisted in promoting dialogue about continuing competence among occupational therapy practitioners in New York State.

Occupational therapists in New York State have to continue the dialogue about continuing competence. State senators and assemblymembers must be lobbied about the importance of this proposed legislation. The language in the proposal can be strengthened through specific alignment with the national NBCOT model. Finally, competing certification models need to be closely monitored so that they do not dilute the value of occupational therapy credentialing. Most importantly, it is critical for the profession to avoid confusing the public with competing competence standards.



References: (links take you off the page; use your browser's back button to return)

Alterio, C.J. (2005, October). The NBCOT Certification Renewal Program and proposals for continuing competence requirements in New York State. Paper presented at the New York State Occupational Therapy Association Conference, Hempstead, NY.

American Occupational Therapy Association (2005, May 19). 2005 Representative Assembly meeting highlights. Retrieved November 12, 2005 from http://www.aota.org/nonmembers/area29/links/link05.asp

American Occupational Therapy Foundation (2004). AOTA, AOTF, NBCOT announce collaboration on strategic initiatives. Retrieved November 3, 2005 from http://www.aotf.org/html/strategic_initiatives.shtml

Andrews, L.W. (2003). Maintenance of competence: The debate heats up. Journal of Medical Licensure and Discipline, 89, 11-15.

Birkland, T.A. (2005). An introduction to the policy process: Theories, concepts, and models of public policy making, 2nd ed. Armonk, NY: M.E.Sharpe.

Brown, E.J. (2002, January 14). Texas OTs launch new certification board. Advance for Occupational Therapy, 5.

Glantz, C.H. (2004, May 10). Recommendations for AOTA certification programs. OT Practice, 9-10.

Hinojosa, J. (2004, December 20). AOTA standards for continuing competence: Proposed revision. OT Practice, 12-13.

Institute of Medicine (2003). Health professions education: A bridge to quality. Washington, DC: National Academies Press.

James, S. (2005, Winter). Gaining entry through competency confirmation. College of occupational therapists of Ontario: On the Record, 3.

Mandatory continuing competency requirements for occupational therapists and occupational therapy assistants, A. 5160, NY State Assembly. (2005).

Mandatory continuing competency requirements for occupational therapists and occupational therapy assistants, S. 1388, NY State Senate. (2005).

Mayhan, Y.D., Holm, M.B.; Fawcett, L.C. (Eds.) & the National Commission on Continued Competency in Occupational Therapy. (1999, June). Continued Competency in occupational therapy: Recommendations to the profession and key stakeholders. Gaithersburg, MD: National Board for Certification in Occupational Therapy.

Miller, S.H., & Horowitz, S.D. (2003). Maintenance of certification: Relationship to competence. Journal of Medical Licensure and Discipline, 89, 7-10.

Moyers, P.A. (2002, September 30). Continuing competence and competency: What you need to know. OT Practice, 18-21.

National Board for Certification in Occupational Therapy v. American Occupational Therapy Association 24 F.Supp 494 (1998). Retrieved November 12, 2005 from http://www.gamingip.com/Cases/FullText/CF-OccTherapy.html

National Board for Certification in Occupational Therapy (2003). State Regulation. Retrieved December 12, 2005 from http://www.nbcot.org/webarticles/anmviewer.asp?a=59&z=13

The Citizen Advocacy Center (2004, April). Maintaining and improving health professional competence: The Citizen Advocacy Center road map to continuing competency assurance. Washington, D.C.: Author.

Walker, B. (2004, December 20). Professional titles: Consumer protection, practice integrity. OT Practice, 7.

Wednesday, December 21, 2005

An Analysis of Foster Care Policy and its Impact on Occupational Therapy


Identifying Information

Foster care is defined by the United States Government Department of Health and Human Services as "24-hour substitute care for children outside their own homes… [and] includes all children who have or had been in foster care at least 24 hours. The foster care settings include, but are not limited to family foster homes, relative foster homes…, group homes, emergency shelters, residential facilities, childcare institutions, and pre-adoptive homes." (DHHS, 2003a). According to the most current governmental data, 523,000 children were in foster care on September 30, 2003 (DHHS, 2003b). Children are placed in temporary foster homes when their parents are unable to care for them. Foster care is generally designed as a temporary service for children and families who are experiencing a crisis. New York State outlines specific regulations for foster care (18 NYCRR 421).


History of the Policy

Children in foster care have historically been disenfranchised and underprivileged. Under rules of English Poor Law, colonial parents indentured their children into new homes so that the children could learn trade skills. In the 1850s, ‘orphan trains’ transported orphaned children into western states where they were used for farm labor (Johnson, n.d.). By the early 1900s, some private placing agencies were making board payments to foster parents and ultimately the federal government began regulating foster care under a program created by Teddy Roosevelt. (Hacsi, 1995). The Social Security Act of 1935 included aid for various child welfare programs that led to expansion of foster care. In 1980 the Adoption Assistance and Child Welfare Act provided federal funding to states that promoted adoption of children with disabilities and supported creation of state policies regarding family preservation and reunification. In 1997 the Adoption and Safe Families Act changed regulations in order to improve the safety of children, to promote adoption and other permanent homes for children who need them, and to support families. There are ongoing policy initiatives coming from the 1997 act that are designed to move children from foster care into adoption.

Goals of the Policy

Foster care policy is designed to be supportive of more general child welfare programs. The United States Department of Health and Human Services, through the Administration for Children and Families, provides support and assistance to states so that they are able to implement foster care programs. The stated purpose of these programs is to “promote the well-being of children by ensuring safety, achieving permanency, and strengthening families to successfully care for their children (DHHS, 2005a).”

Children and families are supposed to be the primary beneficiaries of this policy. The American Academy of Pediatrics identifies that most children in foster care experienced abuse, prolonged neglect, and a lack of a stable home environment (AAP, 2000). This multitude of risk factors places children at higher risk for developmental pathology (Zeanah, 2000, p. 109). Accordingly, these children are at greater risk for problems relating to their occupational performance and this has a subsequent effect on the entire family system. Successful foster care placement is supposed to ameliorate these negative factors and promote child wellness and improved family functioning. Reunification and healthy family functioning are the expected outcomes of successful foster care placement. If this is not possible, placement of children in healthy and safe environments is also an acceptable alternative objective. Successful foster care placement provides emergency relief for children and families so that they have an opportunity to work toward improved functioning.

Implementation

Each state sets its own criteria and licensing requirements for foster parents as well as support services and other relevant foster care policies. The New York State foster care program is administered through the Office of Children and Family Services (OCFS). The state coordinates this program through each county.

Criticism regarding implementation of foster care programs is widely reported. Although abuse and neglect by foster parents is statistically low, there are still an estimated 0.05 to 1.62 percent of the children in foster care who are abused and neglected by foster parents (DHHS, 2003c). This statistic is reportedly decreased from prior years.

Despite large federal and state programs, children in the foster care system remain at high risk for many different problems. Halfon, Mendonca, & Berkowitz (1995) report that over 80% of the foster care children in their clinical cohort had developmental, emotional, or behavioral problems. This population of children requires coordinated and integrated service delivery.

There is a tremendous amount of complexity in foster care systems. A multitude of social service agencies has to interact to provide services for children. These include court systems, state and local child welfare systems, private service providers, public agencies, and Medicaid (Bass, Shields, & Behrman, 2004). All of these programs intersect and have a summative impact on children in foster care.

To improve New York State’s approach to foster care and child welfare programs in general, an Integrated County Planning (ICP) Project was implemented by the OCFS and counties between 1998 and 2003 (Greene, McCormick, & Lee, 2005). The purpose of this project was to improve county level collaborative planning and to implement broad child and family service policies consistent with the stated policies of the OCFS. This type of demonstration project is an example of a broad policy initiative that represents beginning action toward improving overall service provision and coordination.

Changes over time

Reporting data to the DHHS is listed according to recent time frames, with the most recent comparative data presented covering the periods between 1998 and 2001 (DHHS, 2003d). During this period, entries into foster care stayed relatively stable, while exits increased slightly and the number of children in care at any one point in time dropped slightly. Placement type at any given point in time remained relatively unchanged. Placement in relative foster homes showed the largest change, dropping 5 percentage points. Regarding permanency goals, the most dramatic change occurred in the proportion of children in the "No Goal Established" category, which posted a decrease of 12 percentage points. Exits to reunification decreased by 5 percentage points. The time children spent in foster care remained relatively unchanged. The age at entry and exit stayed relatively stable between, while the median age of all children in care at a given point in time increased by 1.1 years. The percentage of Black/Non-Hispanic children in care at any given time dropped 6 percentage points; rates for all other race/ethnicity categories increased slightly. The racial composition of children entering and exiting foster care stayed relatively stable. Gender demographics were also unchanged in this time period.

In summary of the above, there have not been large changes in the recent past regarding foster home placements when analyzing aggregate data across the country.

New York State reports significantly greater success in their foster care program. New York State has decreased its foster care population from a high of 53,902 children in 1995 to 29,680 in 2004 (OCFS, n.d.). However, a close analysis of the statistics on the OCFS website indicates that although admissions into foster care and the total number of children in care is trending downward, the number of children discharged from the system is decreasing steadily each year.

Analysis

Recent data shows that over 50% of all children remain within the foster care system for periods of time that exceed eighteen months, and 16% of all children in foster care remain within the system longer than five years (DHSS, 2003b). On average, approximately 85% of children who are in foster care for less than one year experience two or fewer placements, but placement instability increases with each year a child spends in the system (DHHS, 2003c). Ultimately, 57% of the children in foster care are reunified with their birth parents, although in recent years, reunification rates have declined (DHHS, 2003b). Terling (1999) states that reentry into foster care due to additional maltreatment occurs too frequently, and that 37% of the children reunited with their families reenter the system within 3 1/2 years. These statistics indicate that although large numbers of children are successfully cared for in the foster care system, there are still many problems with the system that need to be addressed by new and improved policies.

There have been significant changes in federal budgetary allocation to state foster care programs over time. The federal government currently spends approximately $5 billion per year to reimburse States for a portion of their annual foster care expenditures (DHHS, 2005b). Since 1961, the federal government has shared the cost of foster care services with states. Prior to this time foster care was entirely a state responsibility. Congress created federal foster care funding in response to states that dropped children and families from welfare assistance because of homes that were ‘unsafe.’ Federal funding insured that families would still be able to receive assistance even if their homes were determined to be ‘unsafe.’

Until 1980, federal foster care funding was part of the federal welfare program, Aid to Families with Dependent Children (AFDC). Since 1980 foster care funds have been authorized separately under title IV-E of the Social Security Act. Title IV-E did not significantly change until the passage of the Adoption and Safe Families Act in 1997. Federal foster care program expenditures grew an average of 17 percent per year in the 16 years between the program's establishment and the passage of the Adoption and Safe Families Act (DHHS, 2005b). Now, growth in expenditures is increasing dramatically as compared to the number of children in foster care.

The Adoption and Safe Families Act improved the standards for foster-care practice. Child and Family Service Reviews were mandated by Congress to assess how well states are meeting the standards and these have been reported for several years (DHHS, 2003c). Researchers and policy analysts need to examine this data and begin to determine which states have effective policies that are resulting in improved performance. Conversely, analysis of policy failures can be helpful and instructive in determining foster care ‘best practices.’ The issues surrounding child welfare programs are complex and given the large federal budgetary allocation it would not seem difficult to convince people that efficiency and effectiveness are needed to implement our broad policy objectives.


Impact on Occupational Therapy

Although researchers continue to explore the relationships between foster care and developmental outcomes, not many studies have directly measured aspects of occupational performance that are commonly considered by occupational therapists, such as acquisition of self care, academic, and play skills. Additionally, drawing direct conclusions is difficult because of the multitude of risk factors that children in foster care are typically exposed to. The impact of foster care placements on occupational performance must be inferred from the known impact on subcomponents of performance.

It is well accepted that stress responses associated with abuse, maltreatment, and neglect have a negative impact on children’s behavior (AAP, 2000). Because of the wide-ranging impact of stress, the following areas should be assessed for all children entering foster care: gross and fine motor skills, cognition, speech and language function, self help abilities, emotional well being, coping skills, relationships to persons, adequacy of caregivers parenting skills, and behaviors (AAP, 2000). All of these areas are important aspects of performance that contribute to children’s occupations.

Children in foster care are often provided occupational therapy services through early intervention, preschool, or school-based systems. However, there is little coordination between the legal system, the social services system, and the related services delivery systems. The service delivery systems that provide care for children are complex and overlapping; coordination is not always optimal, and ‘best practice’ models that are described in the literature are very difficult to implement. The result of this complexity is that children who are in foster care do not always receive an optimal delivery of supportive services.

Occupational therapists working in pediatrics need to increase their basic knowledge of foster care and its impact on children and families. There is a strong need for case studies published in the literature that will provide beginning information for the development of practice models to guide occupation-based interventions.

References: (Links take you off the page; use the BACK button to return).

Adoption and Safe Families Act (1997). Public Law 105-89.

Adoption Assistance and Child Welfare Act (1980). Public Law 96-272. 42 U.S.C. §§ 670

American Academy of Pediatrics (2000). Developmental issues for young children in foster care. Pediatrics, 106, 1145-1150.

Bass, S., Shields, M.K., & Behrman, R.E. (2004). Children, families, and foster care: Analysis and recommendations. The future of children. Retrieved December 10, 2005 from http://www.futureofchildren.org/information2826/information_show.
htm?doc_id=209539

Greene, R., McCormick, L.L., & Lee, E. (2005). Integrating the human service system: Final evaluation of the NYS Integrated County Planning Initiative, Albany, NY: Rockefeller College of Public Affairs and Policy.

Hacsi, T. (1995). From indenture to family foster care: A brief history of child placing. Child Welfare, 74, 162-80

Halfon, N.G., Mendonca. A., & Berkowitz, G. (1995), Health status of children in foster care: The experience of the Center for the Vulnerable Child. Archives of Pediatrics and Adolescent Medicine, 149, 386-392.

Johnson, M.E. (n.d.) Orphan train movement: A history of the orphan trains era in American History. Retrieved December 10, 2005 from http://www.orphantrainriders.com/otm11.html

National Foster Parent Association (n.d.) History of Foster Care in the United States. Retrieved December 10, 2005 from http://www.nfpainc.org/aboutFP/FC_history.cfm?page=2

New York State Office of Children and Family Services (OCFS), (n.d.). A Message from Commissioner John A. Johnson. Retrieved December 10, 2005 from http://www.ocfs.state.ny.us/main/fostercare/

New York State Office of Children and Family Services (2004). 2003 Monitoring and Analysis Profiles with selected trend data 1999-2003: Child protective services, preventive services, foster care, and adoption in NY State. Retrieved December 10, 2005 from http://www.ocfs.state.ny.us/main/reports/Statewide_2003.pdf

New York State Rules and Regulations, Title 18 NYCRR Part 421. Standards of practice for adoption services.Social Security Act of 1935. Retrieved December 10, 2005 from http://www.ssa.gov/history/35actpre.html

Terling, T. (1999). The efficacy of family reunification practices: Reentry rates and correlates of reentry for abused and neglected children reunited with their families. Child Abuse & Neglect. 23, 1359-1370.

U.S. Department of Health and Human Services, Public Welfare Regulations, 45 CFR1355 57 (October 1, 2003a).

U.S. Department of Health and Human Services. (2003b). The AFCARS report: Preliminary FY 2003 Estimates as of April 2005. Retrieved December 10, 2005, from http://www.acf.dhhs.gov/programs/cb/stats_research/afcars/tar/
report10.htm.

U.S. Department of Health and Human Services. (2003c). Child welfare outcomes 2002: Annual report. Safety, permanency, well-being. Retrieved December 10, 2005 from http://www.acf.hhs.gov/programs/cb/pubs/cwo02/chapters/
executive2002.htm

U.S. Department of Health and Human Services. (2003d). Foster care national statistics. Retrieved December 10, 2005 from http://nccanch.acf.hhs.gov/pubs/factsheets/fosterdlinks.cfm#one

U.S. Department of Health and Human Services, Administration for Children and Families. (2005a). How Does the Child Welfare System Work? Retrieved December 10, 2005 from http://nccanch.acf.hhs.gov/pubs/factsheets/cpswork.cfm

U.S. Department of Health and Human Services, Administration for Children and Families. (2005b). Federal foster care financing: How and why the current funding structure fails to meet the needs of the child welfare field. Retrieved December 10, 2005 from http://aspe.hhs.gov/hsp/05/fc-financing-ib/

Zeanah, C. H. (2000). Handbook of infant mental health (2nd ed). NY: Guilford.

Sunday, December 18, 2005

up in flames

I have had several good reasons to write more this last week but my time has been consumed with so many tasks. That has been somewhat depressing. There is an interesting juxtaposition of living such a tremendously full life and wanting to document some of the more candid experiences here - and then deciding that life is too full to be spending any spare precious moments documenting it. That is interesting to me.

Anyway, today was just the pinnacle of insanity when we walked into the pediatric clinic and were surprised to find the computer turned off. That in itself is not such an unusual finding because power outages do occur and I figured that perhaps the recent ice storms caused some temporary 'brown-outs'. What was crazy was that I precognitively thought to myself "Well I will just fire up the computer here and get to work." So I flipped the power on and the computer literally started smoking.

It is a depressing thing to see a computer go up in flames like that, knowing that all your valuable patient files and billing software are just centimeters away from the smoldering power supply or motherboard. It was a moment of total helplessness and I was just frozen in time and slowly coming to the realization of what was happening. I sat there, eyes blinking and head shaking in desperate disbelief when I heard the quizzical commentary of my colleague, "Chris, is smoke supposed to be coming out of the computer like that?" I don't think she was trying to be funny but the more I think about that moment the more hilarious I realize it actually was.

I did a full system backup about a week ago which I now understand is not recent enough. I considered firing my IT manager (myself) for lack of proper planning but then realized it might not be a good idea to leave the IT department in the hands of colleagues who wonder out loud if computers are supposed to have smoldering smoke trails when they are turned on. So I spared myself and ran out to the computer store and begged the guy to pull out my hard drive and slave it into another computer. Thankfully, God watches over fools and little children so my hard drive was spared in this catastrophe and all my data was recoverable. That was a close call.

On a side note, this was the second dramatic incidence of divine intercession this week. Someone is trying to tell me something.

So life is full and we are blessed in oh so many ways.

Sunday, December 11, 2005

forensic occupation

Here is a question I had the opportunity to respond to recently: Should the justice system focus on punishment or rehabilitation? Why? How does this affect occupational therapy?

I don't intend to take both sides of this issue as a 'cop-out' but I believe that prisons should focus on both punishment and rehabilitation. I'll address punishment first, as that seems to be the easier topic.

Some people commit crimes that are so heinous that they simply deserve to be punished. In my opinion, the best way to do that is to keep people incarcerated and separate from society for the rest of their lives, without opportunity for parole. Their treatment should be humane, but they should not be afforded luxuries including education, work-release, halfway houses, or parole. I believe that some people are not capable of rehabilitation, and they should not be eligible for rehabilitation. I don't know that I have a set of criteria ready to list that would preclude rehabilitation but it would make for interesting conversation.

As for rehabilitation, I did some cursory literature review and googling around to see what has been published. There is a tremendous amount of literature on this topic but much of it seems to be agenda-driven. To be more specific, it seems that a lot of the information that is available pre-supposes that rehabilitation is either a good thing or a bad thing. A lot of bias (in both directions) seems evident when I was reading some of the articles.

I was interested in the fact that this is a very actively debated issue - I found many interesting recent references to 'faith-based' rehabilitation (Pew Forum). Again, this was an example where people's bias is notable in their opinions regarding prison rehabilitation. It amuses me that people who would normally be very pro-rehabilitation become very anti-rehabilitation when the rehab includes religious conversion. It does not seem to matter that they are trying to develop multi-faith programs; the simple fact that it is religion-based makes many people upset.

The US Government's position is that "research has conclusively demonstrated that participation in a variety of programs that teach marketable skills helps to reduce recidivism. Additionally, institution misconduct can be significantly reduced through programs that emphasize personal responsibility, respect, and tolerance of others. Accordingly, the BOP offers a wide variety of program opportunities for inmates that teach pro-social values and life skills" (Bureau of Prisons, 2005).

I don't imagine that the concept of budgeting money to prison programs is the first priority of most people, but perhaps we need to discuss this issue more.

Occupational therapy definitely has a role to play in prisoner rehabilitation. I am aware that some fine colleagues at Duquesne have done some work in this area recently - one of their articles on this topic is in press now and will make for interesting reading. Everyone should look for it and read it when it comes out.



References:

Eggers, M., Muñoz, J.P., Scuilli, J. & Crist, P. (in press) The Community Reintegration Project: Occupational therapy at work in a county jail. Occupational Therapy in Health Care, 20, 1.

Federal Bureau of Prisons, Inmate Matters, Retrieved 12/11/05 from http://www.bop.gov/inmate_programs/index.jsp

The Pew Forum on Religion and Public Life, Retrieved 12/11/05 from http://pewforum.org/news/display.php?NewsID=2333

Thursday, December 08, 2005

occupation and identity

I went to my daughter's Christmas concert this evening, and this event always evokes some thinking. I live in a smallish place, and there are some particular traditions associated with the school's Christmas concert. Each year one of the final songs is the Hallelujah Chorus and members of the audience are invited to go on stage and sing with the students. Now my son just graduated so of course it is much too un-cool for him to step onto that stage yet, but I expect that at some point in time he will fondly recall the regional tradition and he may even choose to go sing on that stage again. It is the stage that he was on when Emile de Becque kissed Nellie Forbush, the stage where someone handed him his diploma, and of course the stage where he sang the Hallelujah Chorus . It will be a return, because it is a part of him. Perhaps it is a part of his identity, and the occupations that he engaged in on that stage were all quite defining for him.

I hope I am not presuming too much. If he reads this he is going to kill me. It is 3:53am and he knows I lose inhibitions when I write at this hour so he will probably forgive me.

Well anyway... here is the connection to OT.

Soren Kierkegaard (1938) wrote that “Life must be understood backwards.” Reminiscence is a developmental, generative, and restorative process that is defined as the recall of familiar past events (Woodward, 1997). Havighurst identified that life review is an important developmental task of old age (1972), and first identified correlation between high frequency reminiscence and psychosocial adjustment to aging (Havighurst & Glasser, 1972). Reminiscence is a technique or intervention that has since been used in order to help people ameliorate depression, foster positive self esteem, and promote life satisfaction. The use of reminiscence is a manipulation of context: a recalling and retelling of different times, different places, and different memories that are far removed from the immediate contextual references.

I am imagining that stepping up onto that stage provides a physical and real life prompt for reminiscence. It is a ride back into time for people. It connects their past with their present. And next year they will get to do it again, and perhaps they will get to sing on stage with their children, or maybe even their grandchildren.

There are broader community and social and cultural connections here also, all serving to reinforce the concept of occupational identity on levels larger than the individual.

I am just a crazy outsider, a detached social scientist and occupational therapist making observations here because I never sang this song on stage in this community. But Caleigh, my 13 year old daughter, mentioned tonight - "I can't believe that next year I will get to sing the Hallelujah Chorus at the end of the concert." It has meaning for her and it hasn't even happened yet. That is intriguing to me.




References:

Havighurst, R. J. (1972). Developmental tasks and education, 3rd edition. New York: David McKay.

Havighurst, R. J., & Glasser, R. (1972). An exploratory study of reminiscence. Journal of Gerontology, 27, 245-253.

Kierkegaard, S. (1938). The journals of Søren Kierkegaard... a selection....(A. Dru, Trans.). London: Oxford University Press. (Original work from undated papers).

Woodward, K. (1997). Telling stories: Aging, reminiscence, and the life review, Journal of Aging and Identity 2, 149-63.

Sunday, December 04, 2005

An Analysis of Head Start Policy and its Impact on Occupational Therapy



Identifying Information

The Head Start and Early Head Start programs are comprehensive child development programs that serve children from birth to age 5, pregnant women, and their families. The program provides services to low-income preschool children including children with disabilities. The program is designed for children to achieve social, emotional, physical, and mental development. Head Start is a federal program within the Administration on Children, Youth and Families in the Department of Health and Human Services (DHHS). It was most recently reauthorized through fiscal year 2003 by PL 105-285. The program was scheduled for reauthorization in 2003 but no agreement could be reached on proposed changes to the programs. Head Start reauthorization is being currently debated in the House and Senate.


History of the Policy

The Head Start programs were originally a part of the ‘Great Society’ ideas that became the domestic policy initiatives of President Lyndon Johnson (1964). Johnson was committed to the legacy of Roosevelt’s New Deal. His policy initiatives included an expanded role of the federal government to raise the standard of living in urban areas, programs to maintain and improve environmental protections, and programs to improve the quality of national education.

The first ‘Great Society’ educational program, entitled Project Head Start, was funded through the Economic Opportunity Act of 1964. At that time, Head Start was an eight-week summer program. The project was designed to help end poverty by providing preschool children from low-income families with a program that would meet emotional, social, health, nutritional, and psychological needs.

President Nixon transferred Head Start programs to the Office of Child Development in the US Department of Health, Education, and Welfare which later became the DHHS. The Head Start programs are administered by local community organizations and schools. Head Start programs are funded by the DHHS Administration for Children and Families and the program are primarily for children whose family income is below the level set by the DHSS.


Goals of the Policy

The purpose of the Head Start programs are to promote school readiness by enhancing the social and cognitive development of low-income children through the provision of health, educational, nutritional, social, and other services. Services are delivered according to a needs assessment. Head Start uses a comprehensive service approach to early childhood education. These comprehensive services include Early Childhood Development and Health Services, Family and Community Partnerships, and Program Design and Management (NYSHSA, 2004). As part of this comprehensive service approach, Head Start programs have stringent program outcome requirements that must be met in order for them to continue to receive funding.

Head Start is designed to directly provide educational services to impoverished children, but in a broader sense the program provides social, health, and nutritional services to children and their low-income parents (Barnett & Hustedt, 2005). Head Start program outcomes are supposed to broadly include improvements in child health, parental involvement, nutrition, social activities, and school transition activities. There are also education performance standards to ensure the school readiness of children. Specifically, children enrolled in the program are supposed to develop phonemic, print, and numerical awareness. Standards are written for children to understand and use language to communicate for various purposes, to understand and use increasingly complex and varied vocabulary, and to develop and demonstrate an appreciation of books. Since Head Start programs also provide services to some non-English speaking children, these students must also demonstrate progress toward acquisition of the English language. Additional program outcomes for the program include administrative and financial management standards and standards relating to the condition and location of Head Start facilities.

Implementation

Grants for the operation of Head Start and Early Head Start programs may be awarded to either public or private, for-profit or non-profit organizations, or public school systems. Actual program implementation can vary between localities, but an outline of one local Head Start program is provided for reference.

Holy Cross Head Start is a local Head Start program in Erie County of New York State. The program has five locations throughout the county. The program is administered by Project Head Start of Erie County, which in turn is funded by the Community Action Organization of Erie County. Community Action Organization of Erie County, Inc. provides a variety of services to low-income communities including Head Start, food programs, drug abuse programs, and other neighborhood services programs. They in turn receive their funding from the United States Health and Human Services Department, New York State Department of State, Community Services Block Grants, New York State Medicaid programs, Erie County, Catholic Charities, and a number of other funding sources.

The Holy Cross Head Start program is for children in Erie County who are three years of age and older and whose family income is below the level set by the Department of Health and Human Services. Head Start is a free program to all children who meet these eligibility requirements. The program is child-focused and has the overall goal of increasing the school readiness of young children in low-income families by helping them with achievement in social, emotional, physical, and mental development. There is no Early Head Start component to this local program. The example of the Holy Cross Head Start is a fairly typical example of how a community can choose to implement a Head Start program.

Changes over time

The Head Start program has steadily increased in scope and size since its inception. As previously identified, the program was initially an eight week educational summer program for three to five year olds and has since expanded to a year-round education, health, and nutrition program for children from birth to five.

There were several points of notable growth to the Head Start program over time. In 1972 the Economic Opportunity Act was amended, calling for expansion of Head Start program opportunities for children with disabilities. The legislation mandates that at least 10 percent of the national enrollment of Head Start consist of children with disabilities. In 1973 the home-based program option was initiated. This service provided visits in the family's home to help facilitate parental involvement with their child. In 1994 the Head Start Reauthorization Act added the Early Head Start program, whose mission is to promote healthy prenatal outcomes for pregnant women, enhance the development of very young children, and promote healthy family functioning. This program expanded Head Start services to children aged birth to three. In 1998 the Head Start Reauthorization Act included a mandate to expand Head Start to full-day and full-year services.


Analysis

The Head Start program was scheduled for reauthorization in 2003 and has been the topic of heated Congressional debate. President George W. Bush proposed several significant changes to the Head Start program including giving states control over programs, increasing accountability standards, and refocusing the program on educational objectives. These proposed changes were not well received by the media or by Democratic members of Congress (Miller, 2003). Opponents to this plan are concerned that states would not appropriately fund Head Start and that the Head Start program is functioning well as it is currently designed.

Current reauthorization bills include The School Readiness Act of 2005 (H.R. 2123) and the Head Start Improvements for School Readiness Act (S. 1107). Both of these bills are awaiting floor action. Head Start programs are the subject of strong partisan politics with both Democrats and Republicans firmly entrenched in their respective positions regarding the program.

Research on Head Start outcomes has been mixed (Barnett & Hustedt, 2005). Critics state that that there is only tentative evidence to support the long-term effectiveness of Head Start programs. These critics believe that there is ‘fade-out’ of benefit by early primary grades on measures of IQ and academic achievement. Proponents of Head Start state that there is evidence suggesting decreased grade retention, decreased need for special education, higher rates of high school graduation, and decreased rate of incarceration among Head Start participants.

According to DHHS (2004) the fiscal year 2005 appropriation to Head Start programs is $6,609,290,000. An additional $233,824,000 is appropriated in 2005 for support programs including training and technical assistance, research, and program review. This totals a 2005 appropriation of $6,843,114,000 which is in stark contrast to the 1965 appropriation of $96,400,000. Head Start funding has increased every year since its inception. These high appropriation figures provide important context in understanding the passion associated with the Head Start debate.

There are some obvious problems in policy relating to early childhood health and education services that need to be addressed. The addition of the Early Head Start program has the potential to confuse community service delivery of Part C services that are already provided under IDEA as the early intervention program. DHHS identifies some areas of overlap between the two programs but states that Early Head Start can help to provide services to children who need help but are not receiving Part C assistance. According to their research, certain demographic groupings were less likely to receive Part C services and are particularly helped by Early Head Start programs. These groups include children in Hispanic families, children of teen and less-educated parents, and children of parents with moderate or high levels of cumulative demographic risks (DHHS, 2005). It will be helpful for future policy initiatives to more clearly delineate the roles of the respective Part C and Early Head Start programs.

Teacher qualifications are another significant problem with the Head Start programs. The Head Start Reauthorization Act of 1998 mandated that at least 50% of Head Start teachers have a minimum of an associate’s degree in early childhood education. Although it appears as though this standard has been met, there is still significant concern that this is an unacceptably low standard and that Head Start does not have the adequate funding to attract qualified teachers (GAO, 2003). Many care providers in Head Start programs lack appropriate credentials. It is a legitimate criticism to state that the Head Start program has confused policy between providing an early childhood education program and providing a job training and childcare program. Approximately 30% of Head Start staff has current or former children enrolled in the program (GAO, 1998).

Legislators need to carefully consider facts when debating policy associated with Head Start. Failure to reauthorize Head Start will contribute to ongoing policy confusion regarding the aims of the program. Other governmental programs such as NASA and Amtrak should serve as grim reminders of the policy morass that ensues when programs are left in the middle of bitter partisan political debates.

A bipartisan summit on the legitimate goals of the Head Start programs would provide an important first step toward cogent policy development. Concerned stakeholders including policymakers from DHHS and the Department of Education should be involved. There are many legitimate needs of the population served by the Head Start program. It is important to begin discerning between the programs that the involved agencies provide.


Impact on Occupational Therapy

Head Start programs do not provide direct funding for occupational therapy services; rather, they provide a context where these services may be delivered. Many of the children who are eligible for services under Parts B or C of IDEA may be seen in the context of Head Start programs. In these cases the Head Start program may represent their ‘natural environments.’ Any change in the Head Start program has a potential impact on the delivery of occupational therapy services to the children who participate in that program.

There are large numbers of Head Start-eligible families who are not currently enrolled in the program (ACF, 2001). Changes in program recruitment and enrollment have a potential to impact occupational therapy service delivery. It is likely that some of the children not enrolled in Head Start may be enrolled in other preschool programs where occupational therapy can be provided. However, it is more likely that many of these children who are not enrolled in Head Start will simply not be ‘identified’ as requiring related services until they reach school age.

Very little literature has been published by occupational therapists regarding children’s participation in Head Start programs. Marr, Cermak, Cohn, and Henderson (2003) documented the differences of time spent on fine motor activities between Head Start programs and kindergarten. However, there is no nationally standardized curriculum for Head Start and these observations were made in a two-county rural region, limiting the generalization of the results. This underscores the need for occupational therapists to be aware of the structure and curriculum of Head Start programs in their own geographic regions and to design interventions that meet the needs of children within their specific programs.

The needs of children who attend Head Start programs are significant but the delivery and reimbursement systems supporting related services are fragmented. Occupational therapists have an opportunity to advocate for improved coordination of health promoting and developmental services, to advocate for requirements that service providers have appropriate credentialing, and to propose innovative occupational therapy services that will address unmet needs. All of these actions will help to improve the quality of Head Start programs.

In the interim, occupational therapists should pursue grants and alternative funding mechanisms so that these important services can be provided directly in the context of Head Start. Small demonstration projects may be a potentially useful mechanism for occupational therapists to show the effectiveness of their programs. Therapists in preschools, outpatient programs, and private practice settings should also re-emphasize health and developmental needs in their programming so that these services can be extended to children in Head Start programs.




References:

(links take you off the page; use your browser's 'Back' button to return).

Administration for Children and Families (ACF) (2001). Reaching out to families: Head Start recruitment and enrollment practices. Retrieved November 20, 2005 from http://www.acf.hhs.gov/programs/opre/hs/faces/reports/
reaching_out_families/reaching_title.html

Barnett, S.W. & Hustedt, J.T. (2005). Head Start's lasting benefits. Infants and Young Children, 18, 16-24.

DHHS (2004). Head Start program fact sheet. Retrieved November 20, 2005 from http://www.acf.hhs.gov/programs/hsb/research/2005.htm

DHHS (2005). Early Head Start Research and Evaluation Project (EHSRE), 1996–2005. Retrieved November 20, 2005 from http://www.acf.hhs.gov/programs/opre/ehs/ehs_resrch/index.html

Economic Opportunity Act of 1964, Public Law 88-452.

Economic Opportunity Amendments of 1972, Public Law 92-424.

Head Start Act, Public Law 97-35, 42 USC § 9831 et seq.

Head Start Reauthorization Act of 1994, Public Law 103-252.

Head Start Reauthorization Act of 1998, Public Law 105-285.

Individuals with Disabilities Education Act (IDEA) Amendments of 1997, PL 105–17, 20 U.S.C.§§ 1400 et seq.

Johnson, Lyndon B. (Speaker). (May 22, 1964). The Great Society. Retrieved November 20, 2005 from http://www.americanrhetoric.com/speeches/lbjthegreatsociety.htm

Marr, D., Cermak, S., Cohn, E.S., & Henderson, A. (2003). Fine motor activities in head start and kindergarten classrooms. American Journal of Occupational Therapy, 57, 550 –557.

Miller, G.M. (2003, July 15). The Crush of Criticism on the RepublicanHead Start bill Continues. Retrieved November 20, 2005 from http://edworkforce.house.gov/democrats/headstartdc2.html

New York State Head Start Association (2005). About Head Start. Retrieved December 2, 2005 from http://www.nysheadstart.org/history.html

The School Readiness Act of 2005 (H.R. 2123). Retrieved November 20, 2005 from http://thomas.loc.gov/cgi-bin/query/z?c109:h.r.2123:

The Head Start Improvements for School Readiness Act (S. 1107). Retrieved November 20, 2005 from http://thomas.loc.gov/cgi-bin/bdquery/z?d109:S.1107:

United States General Accounting Office (GAO) (2003). Head Start: Increased percentage of teachers nationwide have required degrees, but better information on classroom teachers’ qualifications needed. Retrieved November 20, 2005 from http://www.gao.gov/new.items/d045.pdf

United States General Accounting Office (GAO) (1998). Head Start programs: Participant characteristics, services, and funding. Retrieved November 20, 2005 from http://www.gao.gov/archive/1998/he98065.pdf

Friday, December 02, 2005

Metablogging and interactivity

I apologize in advance for the rambling nature of this entry, but stream of consciousness is part of the process, and I hope helps to lead to an understanding of the issue.

As I see so many children who have attending and regulatory-type difficulties I spend a good deal of my time investigating strategies that will help them to improve their capabilities. In order to be successful those strategies have to be reinforced, and so logically this means that the rest of the world that interacts with kids has to 'believe' in the stragegy if they are going to help facilitate its use. This is a primary problem with many sensory-based interventions that lack the face validity needed that would support general acceptance. Throw in the issue of a total lack of evidence and mix in the intraprofessional dogma that clinicians are fed about sensory techniques and you essentially have the current evidence-less state of clinical pediatric practice today. That is rather grim now, isn't it?

Well anyway I am taking a long time to get to the point.

This leads me to mentioning metacognition - or very simply stated - "thinking about thinking." There is a lot of face validity to the concept of teaching a child to cognitively self-monitor. I haven't specifically done much literature review on the technique to see if there is evidence already published so that is being put on the list of things to do. Anyway, people 'get' self-monitoring. It is an educational and behavioral method and I never have difficulty getting the world to buy in to the concept.

I mention metacognition because in my Fulleresque brain it leads directly to metablogging, which is something that I have really wanted to talk about lately as it relates to Interactivity and this whole experiment in online writing. OK, so now we need to take a dive into interpretive literary methods so I can connect all these dots.

Sartre studied the concept of emergent discourse and identified that one of the chief motives of expression through writing was “the need of feeling that we are essential in relationship to the world” (Sartre, 1949, p. 39). According to Sartre, the writer creates, waiting for the reader who then in turn objectifies what is written. Both are dependent on the other. Sartre states that “all literary work is an appeal… to the reader’s freedom to collaborate in the production of his work” (p. 46). This is a critical concept, because as it explains the inter-relationship that existed in the transformation of social thought in Renaissance writing, it also will explain the nature of interactivity in modern and post-modern writing.

In his book 1984, Orwell (1949) also explores the nature of discourse through writing. Winston Smith, the protagonist, wonders who he is writing for – and wondered how he could possibly communicate with the future. In fact, Smith was writing for himself, and in doing so engaged himself fully in a real knowledge and affirmation of the world that he was living in. Orwell’s statement “To mark the paper was the decisive act” (p. 10) is an affirmation of Smith’s interactivity with the world – a world that he came to hate and rebel against.

In addition to engaging the author with the larger world, writing also specifically engages the author with the reader. Writing is not a solitary activity. Langston Hughes captured the nature of this interplay beautifully in his poem Theme for English B. Hughes writes:

So will my page be colored that I write?
Being me, it will not be white.
But it will be
a part of you, instructor.
You are white---
yet a part of me, as I am a part of you. (Hughes, 1951).

It is in this interplay between writer and reader that the writer becomes ‘essential’ to the world. This is the nature of modern literature that brought the writer to the world of the reader in an inter-active sense.

OK, so what does this have to do with anything? I am trying to walk you (dear reader) to the question of 'what I am supposed to do with the comments that people leave on this blog?' Some comments are little notes that don't invite or require response but others comments that are left are so incredible. If I don't inter-act with what people are writing back to me it is like I am four years old and having conversations with my pretend friends, neglecting to talk about the proverbial elephants that are in the room.

What an interesting way to explain the possible opportunities lost in a world of post-modern Interactivity. I don't know that I could have described than any better if I stopped to think about it. Stream of consciousness at 3am has its benefits, I suppose.

Anyway, yesterday I received the most incredible response to one of my blog entries and you can read the original entry here and then follow to the bottom to see the comment that was left. It made my day in so many ways I can't even begin to express it.

There was another comment left the other day by a parent who was grappling with the difficulties that their child was having in school. This parent captured in a few sentences what I stumbled through an entire entry trying to express. Read the comment here. Don't you just want to reach out and DO SOMETHING about this? This small comment explains my raison d'être. I hope that the person who wrote that comment calls me so we can talk about the issue.

So now I feel better. Metablogging. I have to find a way to understand how this interactivity works...

- you are a part of me, as I am a part of you.


References:

Hughes, L. (1951). Theme for English B. In L. Altenbernd Anthology: An introduction to literature. New York: MacMillan Publishing Company.

Orwell, G. (1949). 1984. New York: The New American Library.

Sartre, J. P. (1949). Literature and existentialism. New York: The Citadel Press.

Sunday, November 27, 2005

prayer as occupation

I saw my first patient 20 years ago, and at that time the debate was raging over whether we should call the people who we work with 'patients' or 'clients.' I don't know that there was ever any 'official' decision made, but now we see patients, clients, students, workers, etc. I usually use the term patient, which is mostly out of habit. When you work in a single field for 20 years you can be accused of being 'old school' and old habits die hard.

But I didn't choose to write tonight about semantics.

I was thinking back to my first patient contact 20 years ago because that is when I learned about people who have cancer. When I am struck squarely between the eyes with a proverbial baseball bat I automatically start working from the beginning of my experience to remember what I have done before, seen before, experienced before. My experience is my crutch, like an old man's walking stick.

A former patient's mom emailed me today and told me that the child had cancer. This is in addition to the developmental delays that the family already is working around. She asked me to pray.

***

Sometimes in my life as an OT I have had people call me and ask me to write a report, or to attend a meeting, or to help obtain a wheelchair. I have had countless small requests, most of which are relatively do-able. But it was in my first experience as an OT that a patient asked me to pray. I can recall praying a bunch of times without being asked, but I think I have only been asked a few times.

Kent Tigges, who was my mentor, told me when I was just 19 years old that it would be very hard to be a good OT and to be agnostic or atheistic at the same time. I had no idea why he said that at the time and I am not sure I had the ability to believe him when he told me this, but I know he was absolutely correct. Kent treated life as though it was OT though, so I don't know if he meant what he said in a strictly or traditionally therapeutic context.

When I was 19 he told me to be ready for the time that a patient asks me the hard questions, like "Why is God doing this?" or "Is my illness some kind of punishment?" or "Do you think I will go to heaven?" About two weeks after he told me to think about my answers to these questions one of his patients asked him directly "Why is God doing this to me? I was a good person and I lived my whole life trying to do the right things. I went to church and I loved my family. Why is this happening to me?" If the patient didn't have cancer I would have thought that I had been set up - but the questions were too contextually appropriate to have been a set up. I will never forget Tigges' answer which flowed as smoothly as anything I have ever heard in my life. I thought for sure that I was about to see the Master in action, but instead he said, "You know, my colleague Chris and I were just talking about this very subject, and I know that he is well prepared to give you an answer that I promise will help." Then he smiled at me, and left me to the discussion.

***

I still don't know why things happen, and I especially don't know why they happen to certain people. I don't know. I reached back into 20 year old journals tonight to find an impossible answer to this problem. I didn't have answers then and my mentor did not have answers either. We went into scores of homes to work with people in a hospice program and we never found an answer. After his daughter's funeral I sat with him and we cried together and I know at that moment that we didn't have answers. After I received a phone call telling me that he died I sat in stunned silence, waiting for the Universe to provide an answer. I am still waiting.

***

A primary motivation for my writing is because I wait in anticipation of the person who will read my writing and tell me, "Oh, Chris - don't you understand? This happened because..."

***

"Prayer helps," someone told me once. When there is so much swirling about it seems like such a simple thing to do. In my small and frail human mind I sometimes wish that people would ask more of me. But I am beginning to understand that perhaps it is the greatest request of all. Paradoxically it is the simplest and greatest thing to be asked to do. Kent knew this, and that is why he told me that a good OT would have a hard time being an agnostic or atheist.

***

An agnostic or atheistic person might have a hard time coming up with an aswer to that request, but Kent prepared me well. Of course I will pray. I'll ask anyone reading this to pray too. I don't know why sad or bad things happen, but I know that the way we respond to them matters. We can give in to despair or we can open ourselves to faith and hope. Of course I will pray, because faith and hope are my best responses, my best choices, and my best answers to situations that are impossible to understand.

Tuesday, November 22, 2005

normal


All I do is write, but not here. This evening I cranked out about 18 pages worth of evaluations. That is single spaced technical reporting. My hands are numb.

I've been spending a little time thinking about what I am choosing to write lately and what I am not choosing to write. There is a story I needed to record - and I will only put the snippet here for memory-jogging purposes, but there was so much behind it.

I have been considering the nature of disability, particularly as it relates to children. It is hard to be disabled as a child because so many people do so many things for you ANYWAY. The standards are just not the same as with adults.

Example: if an adult has a stroke and can't dress themselves, they are considered disabled. If a child has a stroke and can't dress themselves, the parent provides care. Because children are children, and because parents do what they do, the concept of disability is different with kids.

Hmmm.

Well a parent asked me an interesting question the other day. She brought her child to me, asking me for help in determining the nature of the problem for her daughter who was failing in school - except that the school is just pushing her through to the next grade. The child has severe social problems and has some severe perceptual difficulties, but you wouldn't know this by reading the school reports that indicate there is no problem. Mom asked me, "Maybe there really is nothing wrong. Is that possible? Maybe she really is just fine?"

I thought for a moment and I considered the thousand or so kids who had similar problems but whose parents don't do anything. I also considered the kids in inner city areas where there are no resources and no advocates to see that any programs are developed. I also considered the kids in the 1900s who couldn't learn so they dropped out of school and went to work in the factories.

There is a normative curve of function to consider. Someone has to be low average, or even below average. This is dictated by simple statistics.

This leads to the real answer: Your child is only as disabled as they are unable to reach toward your greater aspirations for them, assuming that those aspirations fall at least minimally within the realm of reasonable expectations.

Is this an accurate statement?

Saturday, November 19, 2005

96 hours

I saw a posting on my discussion forums from a previous student; she was talking about her experiences working in pediatric critical care. I am sure that she does an excellent job; she was a very competent student.

I am still recovering from my pediatric critical care experience. Here's a story that is stuck in my mind, despite it happening nearly ten years ago.

***

Transference is an old Freudian term that refers to the unconscious redirection of feelings. I didn't know Mandy for very long, but I felt that I loved her the moment that I walked into her room. This little girl was just six years old, beautiful and blonde - she could have been my daughter. So when I saw her I felt love for her.

When I walked into Mandy's room I also felt an immediate sense of deep and profound sadness. She was lying still in the bed, eyes defocused toward the ceiling, and not responding to anything. In a corner of the room I saw a man who I imagined was her father. His eyes were just as distant as her eyes were and I nodded quietly to him, smiled awkwardly, and then began reading her chart.

Reading a medical chart of a child who is in an intensive care unit is like reading a horror novel - except that the reminder of reality is right in front of you as you read. From the chart I learned that she had just been admitted the previous evening and that she had "severe encephalopathy secondary to warm water immersion and anoxia." In simple terms, she was in the bathtub, unsupervised, and she somehow slipped underneath the water. Her mother, with whom she lived (as the parents were divorced) had been leaving her alone to take a bath for at least a year. Mandy was growing up, was becoming independent, and didn't seem to require the same kind of intense supervision that most people agree younger children require. So, it did not seem negligent to the mother to leave her on her own for taking a bath. The mother was a good parent and she loved Mandy with all her heart. She just never thought that an accident could happen.

That is the problem, though. No one can ever anticipate when something bad will happen. It is impossible to say what happened to Mandy in the tub. Perhaps she hit her head and slipped. Maybe she was playing and trying to hold her breath under water. But at some point the mom noticed that Mandy was taking a long time in the tub, and to this day I can't imagine the terror she experienced when she found her child face up and underwater in the bathtub. Emergency personnel were called and Mandy was resuscitated - and now she was in the pediatric ICU.

The chart indicated that an MRI was completed which is a test that provides a detailed picture of her brain. Mandy had little punctate lesions all throughout her brain, at every level. Clinically, she was in deep coma, unresponsive to even painful stimuli, and given the severity of the damage it was not likely that she would be able to recover.

The doctors wanted therapies to provide comfort care including proper positioning and range of motion. Also, not knowing what the decisions of the parents would be regarding further resuscitation orders they wanted her to be treated aggressively to prevent muscle contractures. This may seem like a small issue when a child is so acutely ill in other respects, but the ICU doctors were good in that they had developed long term vision and they knew that future problems would occur if proper preventative care was not provided from the outset.

The brain works as a large command and control center that not only coordinates movement and speech and thought, but it also keeps all kinds of ‘primitive’ reflexes under control. Take away the ‘higher’ brain functions and you will find ‘primitive’ reflexes strong at work. The primitive reflexes in Mandy’s brain were causing her body to go stiff and straight in her arms, legs, and spine; the medical term for this is decerebrate positioning. This is the kind of positioning that I was to work against, just in case the parents decided to approve of extraordinary measures to keep Mandy alive, such as a tracheostomy, a ventilator for breathing, and a feeding tube.

Underneath the neatly folded blankets I couldn’t see Mandy’s body at all. I just saw her beautiful little face, her hair brushed neatly and falling around her head and shoulders. I introduced myself to the man who did identify himself as her father. I don’t know if he understood what I told him or if he even was able to pay attention to anything I said. His eyes never betrayed that he even recognized my presence. Underneath the blankets I found direct evidence of what was described in the medical chart: Mandy was posturing stiffly into extension and it was very difficult to bend and move her limbs. I told her dad that I would be down a couple times a day to try and move and reposition her, and to teach him to do this as well.

Over the next four days I saw Mandy several times a day. I saw her father also; he had the same plaid shirt, jeans, and work boots that he had on the first time that I met him. Mandy’s mom never came to see her – she was so overcome with her own guilt and her own grief over what happened that she had to be hospitalized. When I saw Mandy I would always talk to her as I attempted to move her. On the second day I asked her father if she liked to be sung to, and he said yes, so I would sing her a different song each time I saw her. I remember that she seemed to relax most when I sang Thunder Road, a Bruce Springsteen song.

**
On the second day the father would stand next to me as I tried to make his daughter comfortable. I would massage her stiff muscles, gently try to move her joints, and move her from side to side so that she would be more comfortable. It was such a small intervention, really. Mandy’s brain was devastatingly damaged, and I was massaging her muscles, singing to her, and telling her how pretty she was as I brushed her hair away from her face. This is the futility of Sisyphus. Or the hopelessness of Prometheus. The feeling is just beyond words or comparison.

***
On the third day I was again completing my care of Mandy, but her father didn’t want to come and stand by her. He was sobbing, gently, but asked that I still work with Mandy. “Don’t mind me,” I remember him saying, and I remember fighting back my own tears as I tried to move Mandy’s arms and legs. Although she was just a child and only had the muscles of a child, this does not adequately explain how tight muscles can get when the brain is damaged. On this third day I could not bend Mandy’s elbows or knees at all; her muscles were rippling underneath her skin, contracting powerfully to make her as stiff and unbendable as steel.

Stress can cause your perceptions to alter and can make your thinking unclear. I remember thinking to myself, “If only I could get her arms and legs to bend - ” as if somehow that would make any difference. As I tried to help her relax and tried to get her limbs to bend and tried to make her more comfortable in the bed, she started to cry. Not audibly. She just had tears in her eyes, rolling down her cheeks. Her eyes were still defocused, staring blankly toward heaven, she was just as unresponsive as ever, but that day she cried.

Panicking, and thinking that perhaps I had hurt her, I remember snapping clearly back to my senses. I remember saying to myself, “Dear God, what am I trying to do?” I gently wiped her eyes, sang to her, and just held her hand. “I’m so sorry, Mandy,” I said quietly to her, not even knowing what I was apologizing for.

****
On the fourth day Mandy’s chart said that the parents signed a ‘do not resuscitate order,’ which precluded the doctors from performing any excessive or extraordinary lifesaving procedures. Now they were waiting for her to die.

Her breathing had changed noticeably. The medical term for this is Cheyne-Stokes respirations. She would breathe rapidly for a time, and then stop breathing, and then have another period of rapid and deep breathing. Each time we would wait for her to start breathing again, and I remember feeling my own pulse race in anticipation of her next breath. This cycle repeated for much of the morning of the fourth day.

In the afternoon the staff who cared for Mandy had all gathered, as it was evident that she was dying. We stayed with the father and stayed with Mandy. And we all held each other. As her breathing became even more episodic the nurses took away the monitors and wires. Then, after a period of not breathing, and my own heart pounding in my ears waiting for her next breath, Mandy didn’t breathe again.

Wednesday, November 16, 2005

On string theory and muddy paws


I mentioned a couple months ago that I would be an astrophysicist if I wasn't currently practicing as an OT. Actually, I lack the mathematical ability to do this kind of work seriously. Despite this, in my ongoing attempts to enlighten myself on the nature of the universe I went and listened to a Brian Greene lecture this evening.

This actually does have something to do with OT. This has to do with our choice of occupations and the impact that it has on our world-view.

I have a General Systems Theory Knowledge Map hanging on the wall of my office. I keep it there to remind me to think expansively, but the bottom end of the Knowledge Map is a little outdated - I think it lists atoms or perhaps just quarks. Tonight the lecture was about strings, of course. It was interesting, but perhaps not as technical as I was hoping to hear.

Actually the most important part of the evening to me was listening to the questions that people asked him. There were some very hostile questions, although they were asked politely. One had to do with the existence of God. Another had to do with the theoretical presence of a 'Love' force (in addition to electromagnetics).

Some people don't want to hear that life as we know it can be explained by wave structure. Perhaps it really can't - and I think that is the point. The audience's questions can't be broken down into psychophysiological correlates of string resonance. This is the disconnect that I am not sure the Academy understands. Physics is a closed system science, dependent on a clockworks-type of model in order for it to work. People's lives are too interdependent on other systems to be understood at the clockwork level.

General and dynamic systems theory states that the whole can't be explained simply as a sum of its parts. The behavior of electrons passing through my computer is governed by quantum laws, but I am typing this to you and you understand it because of linguistics and communication theory. It is a little arrogant to think otherwise. Smart people should know enough to reject models that embrace reductionistic models of upward causation.

We are still struggling with everyday problems in our society and people just don't draw connections between science and everyday living. Here is an illustation: on my way out of the lecture I was talking to my son when I got a cell phone call from home. My son and I were discussing the nature of the universe and the phone call was from my family who is tired of this long and wet Fall and the way that the dog is getting mud all over the kitchen. No one wants to clean up after the dog constantly, and it has been a burden recently. So, they want to put boots on the dog. It's a funny thought, actually - and the timing of the discussion made it even more funny.

This is the disconnect between string theory and muddy paws. People just have too many other problems to deal with, and it is frightening to people when they hear scientists speak so boldly about Unifying Theories of Everything.

We are just not ready yet, and perhaps our Science has outpaced our ability to cope. I predict that we may be ready for string theory when Jerry Springer is no longer an option on the television. Life is complicated enough with people trying to live it in three dimenions - we just aren't ready for any more.

Tuesday, November 15, 2005

overheard


I watched the young boy approach the table at the farmer's market. He was only 8 I figured. Maybe 9. His hands reached immediately for a ball on the table. It was oddly shaped so that as it 'rolled' it would go in unpredictable directions.

The young boy looked at the 75 cent price tag and dug deep into his pocket. He smiled, excitedly: he had enough money. Still, he seemed to pause. I imagined that he was trying to decide. Is this what he would spend his money on?

"My son and I spent hours and hours playing with that ball," announced an adult voice from across the table. "We would play with that ball for hours. It was the most fun we ever had."

I don't know how to convey the true intent of this man's statements. I am sure that I heard something very different than the little boy. I heard a professional farmer's market pitch-man, trying to eke out another sale. The little boy's eyes lit up. This statement made his decision easy. He quickly handed over the money.

Running to the next table I saw him hold the ball up to his father. "Look what I got! And it was only 75 cents! That man said that he and his son had hours of fun playing with it."

The father looked down at the overpriced bauble and yelled back to the salesperson out loud, "If the damn thing was so much fun I wonder why he would ever want to sell it."

The father turned away, consumed in pursuing his own interests. The salesperson at the table shrugged the encounter off.

The little boy stood in the middle of the two, holding his ball.

Sunday, November 13, 2005

Reflections on the occupation of collecting


In an ongoing attempt to develop a (hopefully expanding) understanding of childhood occupations, I offer this self-reflective entry. In it I can find the dynamics of interpersonal interaction, the rule-making and gamesmanship that hopefully leads to participatory democratic thought and action, and of course meaning that transcends time. All interesting, when you consider it was just a childhood collection.

***

Young children enjoy collecting things. Bugs. Baseball cards. Comic books. Rocks. Lincoln pennies. My brother and I collected bottle caps.

I am thinking that Gary, one of my earliest school friends, was the first one to have a bottle cap collection. His Dad worked for the government (we weren't allowed to know what he did - and to this day I still don't know) and he went to odd and exotic places around the world. Their living room was decorated in a Japanese motif - and Gary's Dad brought back bottle caps from Japanese beer bottles. That got us all intrigued.

As ten year old kids we would comb the streets, parking lots, teenage Friday night hangouts, and anywhere else that might provide us with a yield of new and different bottle caps that no one else had.

We called these locations "spots," as in 'I found the most awesome "spot". These "spots" were highly guarded secrets and we would spy on each other to find out where the other person's "spots" were. Deception was frequently used - once Brian and Dave told me that their new "spot" was far far away, and they would disappear from the neighborhood for hours, presumably on their bikes on a trip to their "spot." Turns out that their "spot" was at the deli around the corner that used to dump their broken beer shipments in back of the store.

The bottle cap collections persisted, and the competition for 'biggest' collection was infamous. There were many controversies as well - for example - many states taxed beer products differently, and the breweries would print the name of the state on the side of the cap. If the top of the cap looked the same, but there was a different state name printed on the side of the cap, should that count as a different kind of cap?? This is the stuff of long and heated discussions that went on for years.

We wrote letters to the breweries and they were usually very willing to send samples of their caps. We also used to go to a local German deli owner who imported many unique and rare beers and buy him a beer for his lunch each day - with the contingency that he would deliver us the cap from the beer. We would search people's attics and basements - hoping to find some long forgotten case of beer. The unique finds were legendary: the ancient Blatz beer and cap that I found hidden at a Girl Scout Camp, the cone top caps that Dave found at an antique dealer, The old Reingold and Genesee caps that we found in abandoned buildings on the waterfront.

On January 15, 1978 my brother and I merged our collections together, squashing all competition and creating the largest collection of all our friends. These were the conditions (I still have the original contract):

1. each will have an equal say in every aspect dealing with the caps.

2. trade dealing with single, original, one-of-a-kind caps must be approved by both of us, however, either may trade doubles at will.

3. both of us must share expenses equally.

4. differences must be settled by a neutral party.

5. amendments may be advanced with both of our approval.

Today, I have the caps stored in a box neatly lined with silica to prevent moisture and condensation. At the peak of the collection we had over 1500 different bottle caps, which was the largest collection that was recorded by the East Coast Breweriania Association at that time. Not a bad feat for a couple of kids.

It is such a silly thing, really. But it was important to me while I was growing up. And if you want to know about me, you kind of have to know about that bottle cap collection.