Lessons from Project PLAI in California and Utah:

Implications for Early Intervention Services to Infants who
are Deaf-Blind and Their Families.

 Deborah Chen, Ph.D., California State University, Northridge.
Linda Alsop, M.Ed, SKI-HI Institute, Utah State University.
Lavada Minor, M.A., California State University, Northridge.


Appropriate early intervention services are important for the development of communication skills in infants who are deaf-blind. Oftentimes, however, early intervention programs are not staffed by people knowledgeable about the specialized needs of infants who have both visual impairment and hearing loss.

One of the goals of a recent project called Project PLAI (Promoting Learning Through Active Interaction), was to develop resource materials that early intervention programs could use to teach families how to promote their infantsí communication development. Early intervention programs provide services for children from birth to age three. The teachers and other service
providers who work with children in these programs are called early interventionists. Project PLAI was a research-to-practice project funded by the U.S. Department of Education Services for Children with Deaf-Blindness.

It involved faculty at California State University, Northridge and California State University, Los Angeles working together with the SKI-HI Institute at Utah State University and early intervention programs in both states. Project PLAI developed an early communication curriculum (Klein, Chen, & Haney, in press) and accompanying videotape (Chen, Klein, and Haney, in press).

The project then evaluated these materials while training early interventionists to use the curriculum with families and their infants who are deaf-blind. The curriculum contains five sections with strategies for recognizing communication behaviors, responding to them, and thus supporting early communication development. (An outline of the modules accompanied by a case
study demonstrating their use follows this article). In a 1995 article, Chen and Haney described the underlying principles of the PLAI model. In the final report (1999), they documented the validation process, widespread training activities, and the projectís many outcomes. This article describes how the project was implemented in southern California and Utah. It notes the extensive challenges to effective early intervention services and presents ideas for improving them.
 
Diversity of Project Participants
 
The field-test group consisted of 25 infants, their caregivers, and early interventionists in southern California and Utah those who completed all project activities. (Seven other infants and families began the project but were unable to continue because of the infantís medical needs or family situations.

Infants. All infants had significant and multiple disabilities in addition to visual impairment and hearing loss. Half had gastrostomy tubes (a type of feeding tube), and a similar number had seizures. One-third were on respirators, a quarter had tracheostomies (an opening into the trachea through the neck into which a breathing tube is inserted), and most had been hospitalized at least once since birth. One third of the infants had hearing aids and some had glasses, but few of them wore their hearing aids or glasses consistently.

Cortical visual impairment was the most common cause of vision loss, occurring in two-thirds of the infants. Other visual problems included refractive errors, retinal problems, coloboma, microphthalmia, and other congenital ocular anomalies. A quarter of the infants had no functional vision. More than a third did not respond to sound consistently. Half had slight-to-mild hearing losses, a quarter had moderate losses, and a quarter had severe or profound losses. All of the infants had moderate-to-profound developmental delays, and half had physical disabilities.
 
The infants were between 8 and 33 months old (mean 19.8 months) when they began the curriculum and between 14 and 50 months (mean 31.6 months) when they completed it. Families took between 6 and 21 months to complete the curriculum (average 13.8 months). A quarter completed it in 6 to 8 months. Others needed more time because of their infantsí medical needs, hospitalization, family situations, and other factors such as early interventionistís schedules and priorities, and winter weather in Utah that sometimes made travel difficult.
 
Caregivers. The primary caregivers participating in the project were the childrenís mothers (including a foster mother and a grandmother). Several fathers were also involved in project activities. These 25 families represented a variety of educational, socioeconomic, and linguistic backgrounds. Two parents had just two years of school, most were high school graduates, some had college degrees, and two had doctoral degrees. Their cultural backgrounds included African-American, Euro-American, and Hispanic. Some Hispanic families were bilingual, and others spoke only Spanish.
 
Early Interventionists. In southern California, participating programs involved two private agencies and three local educational districts. In Utah, the families received services from the Deaf-Blind Services Division of the Utah Schools for the Deaf and the Blind. Some early interventionists worked with more than one family participating in the project and some families had more than one early interventionist working with them.
 
Sixteen early interventionists completed the curriculum with their families. They had a variety of qualifications: One was a paraprofessional (high school graduate and parent of a child with a disability); two had credentials and masterís degrees in the area of deaf and hard of hearing; one had a credential in the area of visual impairments; one had a credential in the area of deaf-blindness and a masterís degree; five had bachelorís degrees in child development or related fields and inservice training in early intervention; and two had masterís degrees in special education (one in orientation and mobility and the other in severe disabilities) but minimal background in early intervention. Two were completing their masterís degrees and credentials in early childhood special education, and two others were working on a credential in early intervention competencies.
 
The families and the early interventionists participated in an annual focus group meeting (held in Northridge and Salt Lake City) to evaluate the curriculum process and project activities. Their feedback was invaluable. It guided project procedures and supplemented evaluation data collected from videotaped observations, interviews, and recording sheets. The usefulness of
the curriculum was thus validated in spite of the diversity of the families and infants and the diversity of qualifications of the early interventionists.
 
Training The Early Interventionists
 
The project trained early interventionists to use the curriculum with caregivers during their regular weekly or monthly home visits with the infant. (Factors such as illness or hospitalization of the infant, family situations, other appointments, IFSP meetings, or weather conditions sometimes caused this schedule to vary.) Videotape segments of the infant and caregiver during selected activities and interview information about the infantís communication were used during the training. These same materials were then used by the early interventionists to teach caregivers to use the curriculum strategies. Before training, most of the early interventionists in southern California were not familiar with the key concepts of the curriculum, with strategies for working with infants who are deaf-blind, or with teaching techniques and data collection. At first, some had difficulty integrating the PLAI strategies into their typical home visit activities. They also needed assistance explaining the strategies to caregivers. Many were not yet proficient interviewing or coaching families, or in maintaining contact to complete an objective if a home visit was cancelled. However, once early interventionists and families became familiar with the curriculum, it became easier to use, and the modules were completed more quickly.
 
In California, early interventionists received training on the curriculum at California State University, Northridge (4 half-day or 2 all-day sessions), with time between each session to use specific modules with the families. They then received follow-up support from one of two part-time project coordinators (one was bilingual in Spanish and English) who discussed parts of the curriculum that had been covered during training, provided examples of how particular objectives might be taught, demonstrated how to explain concepts to caregivers, and showed how to complete the data collection sheets. The coordinators also collected baseline and ongoing data through interviews and videotaped observations during home visits with the family.
 
In Utah, two all-day training sessions (with time to use specific modules between each session) was provided for three deaf-blind consultants who already had significant inservice training and experience in early intervention and deaf-blindness. They were already skilled in explaining learning activities to caregivers and interveners (paraprofessionals who worked with the child at home) and were familiar with most of the strategies in the early modules of the curriculum. These consultants learned new strategies from PLAI, including use of a behavioral analysis of infant responses by identifying antecedent events and consequences, turn-taking routines, interruption and delay strategies, and data collection. They required some support from the project in completing data collection sheets. The project coodinator at the SKI-HI Institute collected baseline and ongoing data through interviews and videotaped observations.
 
Challenges for Early Intervention Services
 
Limited Numbers of Trained Interventionists. A major challenge in southern California is a lack of early interventionists trained to work with infants who are deaf-blind. Under Part C services in California, infants with visual impairment, hearing loss, and deaf-blindness with no additional disabilities, are served by school districts. Disabled infants who have other low incidence disabilities (including cognitive delays and multiple disabilities including visual impairment and/or hearing loss) usually receive services from early intervention programs at private agencies. These are contracted by regional centers funded through the Department of Developmental Services. However, school districts continue to serve infants with a range of disabilities if they did so before 1986 when the passage of P.L. 99-457 provided a federal incentive for states to address the needs of infants and toddlers with disabilities and their families. Thus some infants in the project received services from private early intervention programs and others from public schools.

Early interventionists in school district programs have a variety of credentials in special education although it is likely that few have received preservice or comprehensive inservice training in working with infants with severe and multiple disabilities or who are deaf-blind. Service providers in private agencies may be even less qualified since the Department of Developmental Services has not implemented early intervention personnel standards.
 
In Utah, early interventionists called deaf-blind consultants (from the Utah School for the Deaf and the Blind) and interveners provide early intervention services. Interveners provide direct services to the child approximately 10 hours a week and the consultants provide parent education and support during bimonthly home visits. Interveners receive state-sponsored intervener training from the SKI-HI Institute and the Utah School for the Deaf and the Blind.

Deaf-blind consultants have bachelorís or masterís degrees in special education with inservice training in deafblindness through an 82-hour intervener training course and ongoing professional development opportunities. Utah does not have certification in the area of deaf-blindness, but has developed personnel competencies in deaf-blindness early intervention.
 
In Utah, infants who are deaf-blind may also receive services from general early intervention programs for physical or occupational therapy, service coordination, speech and language therapy, and nursing. They also receive services from the Parent Infant Program at the Utah School for the Deaf and the Blind, whose teachers are certified in visual impairments or in the deaf and hard of hearing area.
 
Lack of Early Identification and Follow-Up. Another challenge to providing early intervention services in both California and Utah is the lack of early reliable identification of visual impairment and hearing loss, especially when infants have multiple disabilities. Sometimes this occurs because other medical survival needs are considered to be more important. In other cases, visual impairment may be diagnosed but the infantís hearing status is unknown.

This year, California has begun universal infant hearing screening in about 200 hospitals that are approved by California Children Services and in others that have neonatal intensive care units. However, coordination of screenings, follow-up, and early intervention services still needs to be developed.
 
Universal hearing screening for infants in Utah began in 1993, but was not mandated until 1998 and not fully implemented until July 1999. Hospitals refer infants who have failed screening to a state or local early intervention agency, the school for the deaf or the school for the blind, or to the infantís physician for diagnostic evaluation. The health department coordinates follow-up and referrals to early intervention services when necessary.
 
In southern California, several families involved in Project PLAI, particularly those who do not speak English, did not know how to obtain vision and hearing evaluations for their infants. In both California and Utah, when infants were diagnosed as having a visual impairment and hearing loss plus other significant disabilities, few received glasses or hearing aids when
appropriate. Most of those who did have glasses or hearing aids did not wear them consistently.

We believe this lack of follow-up was influenced by the infantsí medical needs and disabilities and by the priorities of families and early intervention programs. Additionally, some audiologists and ophthalmologists may not prescribe glasses or hearing aids if the infant has intensive medical needs and significant developmental delays. Further, insurance or financial difficulties prevented some families from obtaining hearing aids or glasses that were prescribed for their infants, and some early intervention programs failed to provide follow-up support in this area.
 
Implications for Improving Early Intervention Services
 
Our experience in Project PLAI has identified essential aspects of providing appropriate early intervention services to infants who are deaf-blind and their families. First, the shortage of qualified personnel serving these infants and families requires organized preservice and inservice training efforts to increase professional competencies not only in specialized skills
related to the infantís multiple disabilities and sensory impairments, but also in general skills.

These include (a) working with families of diverse backgrounds, (b) coaching families in communication strategies with their infants, (c) encouraging the use of hearing aids and glasses when prescribed, (d) weaving intervention strategies into the familyís routine, (e) collecting data, and (f) participating as a member of an interdisciplinary team. The multiple learning needs of infants who are deaf-blind require qualified professionals who can help families obtain appropriate medical treatments, hearing and vision evaluations, and other related services.
 
Second, the complexity of these infantsí learning needs demands a team approach. Service providers need to meet with each other and with families in order to plan how to best meet the infantís needs and the familyís concerns.
 
Third, families receiving services through home visits need regular contacts with other families and service providers. Although the home is a natural environment, many parents in the project felt isolated and indicated that they appreciated the annual focus group meetings. Most of these parents wanted additional opportunities for contact with other families who had children with similar learning needs.
 
Further, Spanish-speaking families participated more actively in groups with others who spoke their language than in those where they had to rely on communication through interpreters. The large Spanish-speaking population in southern California requires the recruitment and training of bilingual early interventionists, development of appropriate materials for Spanish-speaking families, and opportunities for these families to meet each other.
 
Summary
 
Providing early intervention services to infants who are deaf-blind and their families is complicated. Not only do the age, abilities, and needs of each infant require an individualized approach, but also family priorities, home culture and language, location, program resources, and state policies influence the nature of intervention services. These complexities emphasize
the need for state technical assistance projects and other state agencies to work together to provide professional development activities for service providers and educational and networking opportunities for families of infants who are deaf-blind.
 
References
 
Chen, D., & Haney, M. (1995). An early intervention model for infants who are deaf-blind. Journal of Visual Impairment & Blindness, 89, 213-221.
 
Chen, D., & Haney, M. (1999). Promoting learning through active interaction. Project PLAI. Final report. California State University, Northridge. (ERIC Document Reproduction Service No. ED432118)
 
Chen, D., Klein, M.D., & Haney, M. (in press). Promoting learning through active interaction: An instructional video. Baltimore: Paul H. Brookes. (Video in English and Spanish)
 
Klein, M.D., Chen, D., & Haney, M. (in press). Promoting learning through active interaction: A guide to early communication for young children who have multiple disabilities. Baltimore: Paul H. Brookes. (Caregiver handouts in English and Spanish)
 
*Project PLAI was supported, in part, by the U.S. Department of Education Research to Practice Grant #HO25S4001 to California State University, Northridge; however, the content of this article does not necessarily reflect the position of the U.S. Department of Education, and no official endorsement should be inferred.*
 

This article was published in the Deaf-Blind Perspectives - Spring 2000 Volume Seven, Issue Three
 


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