Final Report - David B. Shurtleff, M.D.

Abstract

Washington State Childrens Community Health Access Project
for Children with Special health Care Needs and their Families

This project developed teaching clinics associated with formal and informal, postgraduate, baccalaureate courses supplemented by Interactive Video Teleconference

( IVTC ) Consultations and teaching experiences conducted by faculty of the University/Childrens University Medical Group from a tertiary consultation center, the University of Washington. Faculty of the Departments of Pediatrics, Orthopedics and Child Psychiatry participated. The target areas were four rural, isolated, impoverished counties in Washington State, Benton/Franklin Counties Health District, Grays Harbor, Lewis and Yakima County Health Departments. We conducted 2576 patient consultations in 199 clinics ( 172% of our objective ) and an additional 66 consultations via low technology, low cost IVTC using the Plain Old Telephone System ( POTS ) lines. These clinics were associated with both informal and formal 44 courses for 1160 participants ( 362% of our objective ). Whereas we proved that the POTS line dependent technology to be inadequate, we did establish the basic necessities for establishing IVTC consultations that are applicable to high technology IVTC equipment and T1 lines. The local acceptance of these clinics, courses and IVTC forms of these two activities exceeded or approached 90% in all positive categories on a five point Likert Scale despite the inadequate transmission of the POTS line dependent IVTC. Ninety one percent of primary care takers rated "yes" or "most" of their questions had been answered. Eighty seven percent rated the consultation " extremely" or "very" helpful. Those responding indicated that 95.3% were treated with respect. Professional local providers rated the consultations as quality to be "medium high" or "high" 90 % of the time. The importance of establishing service delivery systems for the Native American and Latino populations was both learned and illustrated to insure local community acceptance and teach tertiary consultants cultural sensitivity. Use of local representatives of the American Native Tribes or Nations and Latino community to guide implementation of local programs was illustrated. The project stimulated seven projects to insure continuity including two that are federally funded, two that are contracts with a local school district or American Native Nation. The other three are commitment for a future contract ( being negotiated ) and two commitments for collaboration in the preparation of applications of external support to help two impoverished communities to obtain financial support.

Despite restrictions in funds available for the support for medical care for CSHCN & F, we believe this model will provide a partial solution to the Oppositional Defiant Disorders that arise from chaotic families and frustration from subtle brain disorders that are either acquired or genetic. It serves as a model for both cosmopolitan communities and their suburbs as well as rural, isolated, impoverished communities.

Annotation

This project provided outreach clinics for Children with Special Health Care Needs and their Families in rural, isolated communities and formal and informal education for teachers and health professionals in their communities as to the children’s diagnoses, implications and needs. The majority of diagnoses were related to learning disorders and associated behavior disorders due to frustration or primary behavior disorders due to brain disorders or chaotic family environments. A cost effective, Interactive Video Teleconference system was demonstrated as effective in providing these isolated, rural communities with appropriate tertiary consultations for diagnosis and management techniques. Latino and American Native populations were served in preference. Acceptance by both patient families and local professionals was overwhelmingly positive.

Keywords

American Indians, American Natives, Attention Deficit Disorder, Attention Deficit Hyperactivity Disorder, Behavior Disorder, Birth Defects, Brain Dysfunction, Central Nervous System abnormalities, Children in Poverty, Children with Special Health Care Needs and their Families (CSHCN & F), Children’s Mental Health, Congenital Anomalies, Cultural Diversity, Genetic Disorders, Hispanics, Indians, Interactive Video Teleconference, Latinos, Learning Disabilities, Medical, Musculoskeletal Disorders of Children, Neurodevelopmental Disorders, Neurologic Disorders in Children, Oppositional Defiant Disorder, Public Health, Rural Health, Student Failure, Telehealth, Telemedicine, Video Teleconference.

Problem: This project was designed to empower four culturally different, rural, isolated communities to enhance coordinated health care and health education delivery systems for Children with Special Health Care Needs and their Families ( CSHCN & F ). This system served Aberdeen, Grays Harbor County, Benton and Franklin Counties, and Lewis and Yakima County Health Departments. Each have a high proportion of residents living in poverty. Latinos and Native Americans represent the major non-Caucasians in these counties These four counties represent populations highly susceptible to poor pregnancy outcomes and more CSHCN & F in need of services than receive them. These two ethno-culturally unique groups, Latinos and Native Americans, represent only 3.1 and 4.3 % of the Washington State population. All families - regardless of ethno-cultural heritage—were served by this project.

All four communities had cooperative relationships between the schools and local health departments but lacked locally available, adequately specialized pediatric neurodevelopmental assessments to allow appropriate 0-3 year preschool and school placement. None had developed formal, local, inservice education programs for medical, social and education staff. Such programs were offered only in university or college centers distant from these isolated communities.

Referral of patients from small, isolated rural communities to tertiary care centers is not always satisfactory because a cultural gap inhibits clear communication between many patients and tertiary specialists. In addition, travel is prohibitively expensive and complicated for families without their own transportation. Despite a recently heightened desire for self-determination by some, however, the cultures of these rural communities lead parents to be shy. They often are unable to communicate freely when seen by specialists strange to them in busy city clinics. In addition, the big city specialists are not knowledgeable about cultural diversity and are not sympathetic toward rural folk who misjudge traffic, have transportation problems that cause them to be late and then do not communicate freely. Lack of interpreters who speak the several South American native dialects of our Latinos, the reluctance of Native Americans to talk to strangers, Latino mothers inhibition to talk with males, and lack of family or tribal support in these distant referral center clinics greatly interfere with developmental assessments of children at risk. These are but a few of the reasons for this project’s two primary goals: 1.) To teach medical professionals the value of understanding cultural diversity and the type of resources available to families living in rural, isolated communities and 2.) To develop improved methods of communication amongst rural patients, service providers and regional medical resources.

The Health care delivery system that we developed began as consultation clinics held in local health department space. The venue for these clinics also began in Latino or American Indian Clinics. The Public Health Nurses in each of the four counties collaborating with minority clinic staff solicited referrals of patients from all sources. If the referral was not from a physician’s office, a request for permission to attend the clinic and copies of medical records were obtained from the primary care physician if the family could identify one. Medical, school and social agency records were obtained and sent to the Medical advisor. The types of cases were matched to appropriate consultants from Children’s /University Medical Group ( CUMG ) or a local neurodevelopmental pediatrician. All local child care professionals were notified of the clinic and topics for the associated educational activities were solicited. Patients and families were seen by the consultant and then a conference was held with local health, education and social professionals if the family concurred. Before, during or after the clinic a formal education program was conducted by the Health Educators using the attending consultants and other invited local and tertiary level consultants as faculty. The venue for these clinics changed to schools at the suggestion of local advisors in order to allow more school staff to participate in the patient conferences and education activities. As a result, during the last several years of the project, the majority of the clinics in Western Washington were held in schools.

This total represents 172% of the estimated goal for the project. We believe this success is a measure of the need in rural, isolated communities that has been compounded and adversely affected by managed care.

We originally estimated that 50 to 60% of the patients to be seen would have a diagnosis that had, in whole or part, a social or economic etiology and we experienced 54%. The full list of diagnoses is in Table II.

Note that there were as many as four diagnoses per patient visit. Hence, the percent of diagnoses adds up to 100% but the number of diagnoses per patient visit exceeds 100%. Most notable in this table is the sum of 42 percent of diagnoses that were precursors to student failure or oppositional behaviors. These children were referred because of behavior problems but most had underlying neurological disorders that were the cause for their frustration and adverse acting out behavior. We are looking at a future generation of children who are going to replicate Littleton, Colorado unless their diagnoses are recognized and appropriate interventions instituted.

We were able to identify 49% as being neurologic disorders ( projection was 10-15% ), 15% orthopedic diagnoses ( projection 10-15%), 23 % disturbances of muscle function that would benefit from physical therapy ( projection was 5-10% % ) and an unspecified percent of congenital anomalies ( actual was 11% ) and impairments due to exposure to noxious substances in utero ( actual was 6% ).

We set as an objective that 50 % of our patients would be Latinos or Native Americans. We actually saw 170 Hispanic patients or 15 % of those who identified their race ( 1.7 times their percent in the populations served ) and 162 Native Americans or 15 % ( 8.8 times their percent in the population served ). Although we served greater proportions of minorities than would be expected in the involved populations, we met only 60 % of our anticipated goal.

During the initial phase of the grant, formal, post baccalaureate courses were offered through Seattle Pacific University. The content of these courses was determined by needs assessment as mentioned in the first paragraph of Part I Patient Care, above. These courses were ten hours in length, providing one post baccalaureate credit, and focused on social, embryological and teratology topics such as prenatal and postnatal care as part of the Talking Circle, Fetal Alcohol Syndrome, bowel and bladder disorders, behavior disorders and management. We provided three more courses than originally projected, due to community requests, reached more participants and offered both local and Seattle area speakers. (See Table III below)

TOTAL NUMBER OF COURSE PARTICIPANTS: 1160
(Note – this number of participants is 362% of projected Goals)

* CME Continuing Medical Education

** SPU Seattle Pacific University (Post-Baccalaureate Credit)

^ CEARP Nursing Continuing Education Credit

^^ Clock Hours Educational Service District (Continuing Education Credits)

Participating Educational Service Districts: #105 ( Yakima County ); #123 Benton and Franklin Counties ); #113 ( Clallum, Grays Harbor, Lewis, Mason and Olympic Counties North Central ( Chelan and Douglas Counties )

Participating school districts include: Aberdeen, Adna, Cape Flattery, Cashmere, Centralia, Chehalis, Elma, Grandview, Hood Canal, Hoquiam, Kennewick, Lake Chelan, McCleary, Montesano, Napavine, North Beach, North Thurston, Oakville, Olympia, Pasco, Pe Ell, Prosser, Rainier, Randle, Richland, Rochester, Taholah, Toppenish and, Wenatchee.

In 1995 we established a course entitled "Medical and Educational Collaboration for Children with Special Health Care Needs", also through Seattle Pacific University, offering ten hours of class time across several clinics in each community covered by the grant and providing one post baccalaureate credit to those completing the course. This was the first time such a credit course had ever been offered through Seattle Pacific University, or, to our knowledge, any other university in the area.

During this initial phase of the project we established with Children’s Hospital and Regional Medical Center Continuing Medical Educational credit for local health care providers. We offered "brown bag" lectures at lunchtime on various topics presented by the visiting health care professionals who were seeing patients in the community clinics.

By the end of the fiscal year 1996, 1002 educational professionals had participated in one of the above mentioned courses with a total of 1160 from 1993 through 1999, or 362% of the project’s goal. Approximately, ten health care professionals took advantage of the lunchtime, informal lectures. These professionals spanned a total of nine counties with an average of 33 participants participating in each formal offering.

During the second phase of the grant (1997 and 1998) there was no funding allotted for establishing educational sessions about children with special health care needs. Education efforts were designed to increase familiarity with Interactive Video TeleConferencing on the part of consumers and community professionals of all types. Clock hours were provided through the Educational Service District (ESD) which covers the school districts in the three counties covered by the Extension Grant (Grays Harbor, Lewis, Mason and Thurston). This particular ESD specified that the three hours had to be earned on a single day which made it difficult for educational professionals to take advantage of the credit, since most were attending the clinic session with one particular child and needed to be back in the classroom for the remainder of the day.

The health care and educational professionals found the information received from the consultants worth their time to participate despite not being able to access credits ( 255 professionals attended clinics in 1996-1998 when there were no funds for education but only 7% applied for advertised as available continuing education credits ). An average of 10 professionals attended a portion of each clinic during this phase with a maximum of 2 taking advantage of the credit offered at any one clinic. Over all, 90% rated the experience as of medium high ( 28 % ) or high quality on a 5 scale Likert scale, none as low or poor quality and only 1% as medium low quality.

Up until this point our four year project demonstrated that there was an overwhelming need for neurodiagnostic evaluation of children with learning difficulties that could be the underlying cause for aberrant behavior in isolated, rural communities. A phenomenon that may apply, in addition, to suburbia and central cities. These two problems, learning disabilities and behavior disorders, were compounded by the lack of trained specialists to diagnose these problems in local communities. Those few local pediatricians who are trained and capable of diagnosing these conditions are prevented from doing so by an overwhelming demand to treat acutely ill patients. Secondly, the need exceeded the capacity for neurodiagnosis by regional and tertiary specialists to provide on site local clinics for the needed diagnostic and follow up care that these children need. Therefore, we attempted the use of Interactive. VideoTeleConference ( IVTC ) technology to provide a solution to these problems. The concept was simple and composed of three parts:

1. Have a pediatrician trained in neurodevelopmental evaluation techniques or local medical care provider interview the family and local care providers, examine the patient and then
   
   
2. consult with a tertiary level medical or behavioral specialist at our university.
   
   
3. Use a cost effective, low technology ( a $1,000 hardware/software package at each end using Plain, Ordinary Telephone System ( POTS ) lines for consultation rather than referring the patient or using the 6 times more expensive, high technology I V T C that uses 6 times more per minute expensive transmission T1 lines and equipment that cost $10,00 to $15,000 a piece at each end of the consult. We also anticipated these POTS - I V T C consultations could replace screening, diagnosis, treatment and follow up in more expensive on site clinics. We recognized it would be necessary to train local care providers to use the equipment.

A.) A valuable educational effort of this IVTC project was the extension to the use of the Washington Interactive Television Program, This allowed us to implement a single course in seven of the Educational Service Districts in the state simultaneously during the school year of 1996-97. This course was funded by the March of Dimes and reached approximately, 150 participants. The three part series which was entitled Birth Defects Prevention and Awareness: #1 focused on Fetal Alcohol Syndrome; #2 on Collaboration and Advocacy for Children with Special Health Care Needs and #3 on Genetic Syndrome Awareness. Speakers on these three topics came to one of the central locations for the Washington Interactive Television, in this case Seattle Central Community College, and the lecture was "broadcast" to a dedicated room in each of the participating Educational Service Districts for the participants from outlying school districts. Instructors were: Sandra Clarren, PhD., Cassandra Aspinall, MSW, Jordan Friedman, MSW, Louanne Hudgins, MD, and Cynthia Shurtleff, M.Ed. Videos from each three hour session were copied and provided to each Educational Service District for future viewings by other school participants. Copies are included in this report. These courses will now be available in each school as noted above in Summary of Problems and solutions. Benefits from the educational programs offered included a broadening of credit opportunities and milieus, an increase in interdisciplinary collaboration, the access of outside funding to expand educational opportunities in rural communities.

B.) In 1999 CO-investigators, Stephen Sulzbacher, PhD, child psychologist of the University of Washington Department of Child Psychiatry, and Thomas E Norris, M. D. Assistant Dean for Regional Affairs and Rural Health at the University of Washington, received a three year grant number H 324 R 980113 from the Federal Office of Education to introduce outreach clinics and inservice education, both post baccalaureate and clock hours, including introduction to the pertinent programs on the internet via I V T C consultations into the schools of the WWAMI states ( Washington, Wyoming, Alaska, Montana and Idaho ). This grant ends in 2001. They have a subcontract to provide these services to the Aberdeen School District in Grays Harbor County, Washington and other rural school districts in the WWAMI states. Five other Grays Harbor County school districts and the Administrator of the Clinic of the Confederated Tribes of the Confederated Tribes of the Chehalis met with the current Project Director of this project to develop a means of including their schools and peoples in a contract for outreach clinics and I V T C consultations.

C.) On the 15th of June 1999 the Project Director, Stephen Sulzbacher, PhD, Sterling Clarren, M, D., Head of the Washington State Fetal Alcohol and Fetal Effect Diagnosis and Prevention Program, Cynthia F. Shurtleff, M. Ed, Health Educator, Bonnie Peterson, RN, PHN of the Thurston County Health Department, also the local coordinator for this project, as well as, representatives of the Office of the Superintendent of Public Instruction, St. Peters Hospital, patient advocacy groups and three school districts met to discuss the future of this outreach and I V T C project. All expressed sincere interest. Because this meeting, as well as the 8th of June meeting, mentioned above occurred in the last few weeks of the school year a number of schools and school districts apologized for their inability to attend and announced their intent to continue and expand this pilot project. Future meetings to organize and establish local funding or application for support to continue the project are planned for later this summer in preparation for the beginning of school in the fall this summer was a common agreement. Two school districts, North Thurston and Olympia, committed their own funds to help implement this project.

The two essential ingredients of this project that are of interest to the local communities are:

1. Inservice education for teachers, school specialists, and parents.
2. Individual consultations on school premises for children with behavior problems and potential of having underlying neurologic or other medical causes.

Both would use the T1 line IVTC and the K20 project resources noted above in Problems and Solutions.

In summary, we can state, with assurance, that the combination of on site evaluation clinics and Interactive Video Teleconference consultations and education programs have been established as a priority for all the local communities involved in, or who know about, this project. Continuation into the future is guaranteed based on five facts:

1. The willingness of some local communities to commit funds for future support.
2. For those communities with limited financial resources, they are committed to work with us to develop sources of support.
3. There have been two federal grants implemented to expand and continue this project.
4. The Office of the Superintendent for Public Instruction has committed the resources of the K-20 project that allows us no cost use of high quality IVTC equipment and T1 lines for children in need of medical evaluation or advice for formation of Individual Education Plans, and
5. Junior and senior faculty of the Department of Pediatrics and Pediatric Psychiatry at the University of Washington ( younger than the current Project Director ) have committed to continuing this project into the future with the consultation of the current Project Director and Health Educator.

Their collective goal is to improve the health and mental well being of the youth of our communities by disseminating pertinent, current knowledge and utilizing modern technology.