Education of social workers for intervention with families of children with special needs

Child and Adolescent Social Work Volume 6, Number 4, Winter 1989

Education of Social Workers for Intervention With Families of Children With Special Needs

Bettie S.Cole, Ph.D., Lynda F. Pearl, Ph.D., Marie J. Welsch, Ph.D

A B S T R A C T : With the passage of Publ ic Law 99-457, social workers may be expected to have increased involvement wi th the special needs of famil ies who have chi ldren wi th handicaps. Specific knowledge, skills, and competency are needed to work wi th these special needs chi ldren and the i r families. Social work educat ion mus t be responsive to these needs. The authors suggest competency-based educat ional responses.

Public Law 94-142, passed in 1975, called for an individualized educational plan for all handicapped children (89 STAT, 1975). In 1986, Public Law 99-457 expanded the planning to include mandatory individualized family plans (100 STAT, 1986). The development of these plans calls for competencies in family assessment and intervention beyond the previous scope of educators. This expansion of services is indicative of a broader conceptualization of the needs of young developmentally delayed children. The understanding that families must be an integral part of planning for young delayed children and the realization that comprehensive services require collaboration by related disciplines means that social workers can be expected to have increased involvement with families who have children with handicaps.

Dr. Cole is Assistant Professor, Department of Social Work, East Tennessee State University, Dr. Pearl, Assistant Professor/Associate Director Department of Human Development and Learning Center for Early Childhood Learning and Development at the same university. Dr. Welsch, is Associate of the Listening Tree, Inc., Austin, Texas. Address correspondence to Dr. Cole at the University, P.O.Box 21, 850, Johnson City, Tennessee, 37614

�9 1989 Human Sciences Press 327

328 CHILD AND ADOLESCENT SOCIAL WORK

Prob lems in Educa t iona l Preparat ion

What are some of the unique characteristics and needs of these families? Is the social work profession sufficiently prepared and responsive to this population? These and other questions have become foci for attention in professional literature recently. Wikler and Berk- owitz (1983) reported that a 1978 survey of all social work graduate programs in the country revealed that only "36.4 percent offered a minimum of one course" (p. 10) devoted to the special problem area of mental retardation. Similar results were found in relation to course offerings on work with developmental disabilities by Hall, Ford, Moss, and Dineen (1986) who reported that although some educators and practitioners are beginning to respond to this group, "these ac- t i o n s . . , are minimal if the developmentally disabled are considered a significant minority population" (p. 125).

While Hall, Ford, Moss, and Dineen (1986) found that this group of clients/potential clients remain "an unattractive population to most social workers" (p. 125) they also reported that "many social workers do not have the training, confidence, or agency mandate to work with this popula t ion . . . ; usual interviewing and treatment skills may have to be modified" (p. 128). The social work practitioner's resistance to working with the range of problems experienced by families and individuals with developmental disabilities is undoubtedly in part due to this lack of preparation.

There has been a strong trend in the 1970's and 1980's toward fis- cal and personnel cuts across the board in social programs such as welfare, housing, education and medical care. The emphasis on dein- stitutionalization of persons with all manner of developmental disabilities and the high percentages of these individuals and families living in poverty, increases the need for social work intervention with this at-risk population.

In 1982, the National Association of Social Workers (NASW) and the American Association on Mental Deficiency (AAMD) developed and adopted standards for work in developmental disabilities. These standards mandate that all social workers working with this client group "possess or acquire and develop knowledge about developmental disabilities" (Keenan, 1983, p.42). The literature and the authors' experience suggest that most workers are unaware of the standards or the body of knowledge required. As Kurtz (1983) noted, "most workers have a general understanding of child development but lack specific knowledge and skills to make a judgment, 'I think this child

BETTIE S. COLE, LYNDA F. PEARL, AND MARIE J. WELSCH 329

may be delayed or handicapped'" (p. 71). Cole and Welsch (1988) found that only 49 percent of the respondents to their survey had any knowledge of the standards and few expressed adequate knowledge, competency, and skills in this area. (See Table 1 for competencies, knowledge, and skill areas).

Developmental disabilities include any "severe, chronic disability attributed to a mental and/or physical impairment, manifested before the person reaches age 22, which is likely to continue indefinitely" (Gelman, 1983, p. 13). Individuals are likely to experience severe lira- itations in all facets of life, including self-care, economic indepen- dence, learning and communication, and mobility (Gelman, 1983). Early identification is critical to the enhancement of social functioning of disabled children and their families.

Table 1 shows suggested competencies, skills, and knowledge which social workers should master in order to work effectively with developmentally delayed children and their families. These competency areas include: (1) awareness of common conditions which cause delays in early development; (2) awareness of the impact which the identification of delays may have on the family unit; (3) awareness of community resources which may provide services to delayed children and/ or their families; and (4) awareness of the roles which a social worker can fulfill in assisting families with young developmentally delayed children. Each of these areas will be addressed and examples provided.

Awareness of Common Conditions

Social workers should be familiar with some general information on common conditions which are associated with developmental delay. There are three categories of conditions, identifiable in early childhood: (1) those conditions known to cause delays lasting throughout the life-span; (2) those conditions manifesting in early delays which are usually resolved in early childhood; and (3) those conditions placing a young child at high risk for later developmental delay.

Infants with Down's Snydrome are an example of those who will most likely have delays throughout their lifetime. It is important for a social worker working with a family which has a young child with Down's Snydrome to understand the multiple needs of the child. Typi- cal of these children in early childhood is hypotonia (low muscle tone), recurrent middle ear infection, and expressive language delay. Other conditions which are identified early in the life-span and cause

TABLE 1

A Knowledge/Competency Base for Social Workers Working with Developmentally Disabled Clients

Topics 1. Knowledge of law and judicial

decisions affecting handicapped children. X

2. Ability to identify and resolve conflicts in cultural values.

3. Awareness of the NASW standards related to developmental disabilities. X

4. Knowledge of the major child development landmarks. X

5. General knowledge of the early characteristics of common conditions causing developmental delay. X

6. Knowledge of factors placing children at "high risk" for delays in development. X

7. Familiarity with assessment procedures utilized to determine developmental delays. X

8. Awareness of and ability to utilize relevant community resources and referral procedures. X

9. Knowledge of the impact of developmental delay on the family. X

10. Skills in risk assessment. 11. Skills in obtaining social histories. 12. Skills in determining which children

eligible for screening. 13. Skills in family/group intervention

techniques. 14. Knowledge of techniques for

facilitating social skills development. X 15. Awareness of support networks for

parents with delayed children. 16. Skills in case management. 17. Skill in working with families having

environmental barriers. 18. Ability to work as a member of an

interdisciplinary team.

General Special knowledge competency

X

X

X

X X X

X

X

X

X X

X

X


later delay are cerebral palsy (delays may be motor only), and autism. Some conditions effect the life expectancy of the individual as well as development such as certain congenital hear t conditions.

The second group of young children are those who are quite delayed early on and then seem to "catch up" later in early childhood. Prema- ture infants, those born before 37 weeks of gestational age, often have respiratory and metabolic complications related to immatur i ty of these organ systems which result in their spending the first part of their lives in a neonatal intensive care unit. These infants are dis- charged from the hospital when they are medically stable to continue the healing and growing process at home.

These children often require the "total care" of a newborn for longer periods of time than a typically developing infant. There may be special feeding and positioning techniques required and the infant may come home with equipment to monitor breathing and heart rate. In addition, the family may have many more stressful doctor's visits than a family with a typically developing infant.

Perhaps the most challenging and interesting group of infants are those who are developing typically but are at high risk for delays due to circumstances occurring during the pre, peri or postnatal periods. Many of these children have had diseases or conditions for which suc- cessful t rea tment is relatively new. Because they would not have sur- vived five years ago, there is no data available on developmental outcomes. Families often ask for answers and it is important for a social worker to understand that the long-term outcomes are unknown and often there are no sure answers. Examples which fit in this category are the child of a severely diabetic (Class D) mother, infants born as early as 22-24 weeks of gestational age and some rare syndromes.

Awareness of the Impact on the Family

The high-risk population served by most social workers are partic- ularly vulnerable to stress and further deterioration in family functioning. Families with developmentally delayed children are at far greater risk of experiencing stress than those who have normal children.

The grief, guilt, stigma, anger, isolation, medical care and expenses, and the likely burden of constant care are stressors which often bring about crises in families with a delayed child. "The grief that parents suffer with the birth of a delayed child and the loss of the fantasy or wished-for child is a characteristic reaction to crisis"


(Parks, 1983, p. 97). Ambiguous feelings of loving the child and re- senting the situation in which families find themselves are common. Often there is guilt and questioning regarding the cause of the delay. These feelings may be more intense around the initial diagnosis pe- riod; however, they tend to return at critical events such as assess- ments, school placement decisions, medical testing, and diagnosis.

Not only do the families experience these stresses, but they have a multitude of needs (Chetwynd, 1985; Wilchesky & Reynolds, 1986; Quinn & Pahl, 1985; Wikler, 1983; Faerstein, 1986). Often social workers know little about the effect of an intellectually delayed child on parents, siblings and general family functioning. Although Horejsi (1983) noted that the social work "profession has had long experience in the area of total family intervention" (p. 19) there is much evi- dence to support Sapir's (1986) observation that there is a general lack of knowledge or skill in consulting with and generally involving the family in work with the learning disabled child. One survey (Inei- chen, 1986) found that families with a mentally handicapped member saw much of social work expertise and activity as irrelevant to their needs. While some families have the resources and support to work through these common but disturbing emotions, others will need varying degrees of external support. The wide range of service needs, incredible expense which can be involved, and the intense feeling which can go along with having a delayed child are several explana- tions given for the higher than average stress levels, amount of mari- tal difficulties and rate of child abuse found in families with a delayed member. Social workers may provide the critical links which can aid families in finding support services which meet their particu- lar needs.

An array of family support services are usually available in more urban areas. Many families are helped by talking to other families who have gone through similar situations. For example, one family with a child requiring a gastrostomy (feeding tube going directly into the stomach) expressed a need to talk with a family who had been able to cope with this problem. Although their child had many other serious problems, the feeding apparatus was the priority concern for the parents. Other families might have little trouble with this apparatus, but need support regarding the use of some other piece of equipment or medication.

Intervention programs often include parent training as part of their service. The parent takes part in the work with the child in order to learn developmentally appropriate activities which can be reinforced


in the home. Some early intervention programs also facilitate parents meeting together for the purpose of supporting each other emo- tionally. In addition, sibling groups may be held by the intervention program. The purpose of these groups is the provision of information and support to the siblings of children enrolled in the intervention program. Often they have many questions about their sibling with special needs.

A w a r e n e s s o f C o m m u n i t y Resources

Kurtz (1983) found when working with a rural protective service agency that the workers lacked knowledge and skill in implementing developmental screenings and were generally uninformed about available community resources. He also noted the "scant literature on early identification of preschool children whose deficits include socio- emotional, cognitive, locomotor, sensor, and/or language impair- ments" (Kurtz, 1983, p. 70).

The different types of young children with whom a social worker frequently works may require a wide variety of services. The social worker may serve as the link to these services if s/he is aware of the differential needs of the population. Young children from the three groups discussed above and their families may have needs which span the educational, financial, and/or social service resources of a community.

Knowledge of available educational programs is valuable information for any professional wishing to assist families. Understanding the rights of developmental delayed children under recent federal laws and the advocacy process is extremely helpful to social workers as they attempt to identify educational services. For example, an infant with Down's Snydrome is an excellent candidate for early intervention services. It is important to identify these infants and their families and to refer them for early intervention because "ample evi- dence exists that the provision of these early intervention services can positively alter the course of development for these infants" (Pueschel, Tingley, Rynders, Crocker, & Crutcher, 1987).

Another common need is for referral to sources of potential financial assistance. Developmental delay occurs in families of all economic levels; however, the expenses are so extraordinary that large numbers of families need services such as Crippled Children's Ser- vices to pay for medical follow-up or SSI to pay for equipment and services needed to keep a child in the home. As an example, consider


the case of twins born one month early. The female twin was small but basically healthy. With the help of newborn intensive care, she was able to go home after two weeks. Her brother required much more assistance. He remained in intensive care for four months and required two surgeries. At discharge, his prognosis for normal development was not good. The hospital bill for the male twin was $100,000 and his sister's bill was $10,000. Even after insurance pay- ments, the bill for these children was extremely high and the male twin will probably require follow-up by many different medical and developmental specialists. Special financial assistance was necessary for this upper-middle class family due to the extent of the expense and loss of income because the mother was unable to return to work and a registered nurse was needed every evening.

Social services resources include the provision of emotional support to families. This may be as informal as listening to a problem or as formal as psychological counseling. In some areas other alternatives exist such as parent support and/or training groups and individual family matching. Appropriate resource referral may make the difference between a family's ability to maintain its special child in the home or to seek institutionalization or foster care.

Awareness of the Roles of Social Workers

As social workers develop knowledge and skill in the first three competency areas discussed, these must get t ranslated into action in order to provide relevant services to these families. Social workers functioning as (1) case managers, (2) enablers/facilitators, and (3) resource brokers and advocates can have a positive impact on the lives of families with developmentally delayed children.

In general, case management skills are taught at all levels of social work education and many states now require that social workers in child protective services lead interdisciplinary teams in investigation and t rea tment planning. West (1978) stated that the social workers on interdisciplinary teams were looked to for knowledge of factors influencing child rearing practice and to "take an active role in inte- grating a disabled child into the family" (p. 273). Case management for this special needs population demands knowledge and skill in broad interdisciplinary coordination necessary for appropriate service planning.

The authors have perceived some major underlying problems pre- venting social workers from providing the empathic enabling services

BETTIE S. COLE, L YNDA F. PEARL, AND MARIE J. WELSCH 335

so needed by families with disabled children. A sad example of this is an interaction reported to one of the authors by a foster parent who cared for a medically fragile, very delayed infant. The foster mother reported that the child's caseworker told her that she was afraid to hold or touch the baby and to never ask her to transport the child because she wouldn't do it. This may appear an extreme example; however, a worker who is frightened or uncomfortable with a child is probably unable to assist the foster parents in developing a realistic service plan or to provide emotional support to the rest of the family.

While society as a whole demonstrates fear and misinformation about developmental disabilities, improperly trained social workers are also susceptible to the same fears. Fears such as this can only be overcome by education designed to expose and sensitize social workers to this very special population.

As enabler, "assisting clients to find the coping strengths and resources within themselves" (Comptom & Galaway, 1989, p. 509) the social worker must also be able to call upon his/her own strengths to provide the encouragement and reassurance that reflects empathic concern. The family needs the opportunity to express concerns and feeling openly and freely. The social worker must not only be able to communicate with these families in general, but understand the vul- nerability to communication distortions as described by Walker (1980).

Brokering of services not only requires a broad working knowledge of the community's resources, but a keen awareness of the variety of needs experienced by the client. An intimate understanding of the health, psychological, educational and financial needs of the developmentally delayed child and his/her family provides the basis from which resource utilization springs. Educators have begun developing plans in compliance with Public Law 99-457 (100 STAT, 1986) and must have the committed involvement of the social work profession if these plans are to succeed in maximizing this client group's poten- tials.

Educational Imperatives

Social work educators at all levels bear the responsibility of socializ- ing and sensitizing students to the needs of vulnerable target populations utilizing their services. If developmental disabilities are truly to be No Longer a Private Tragedy (NASW/AAMD, 1983) then a united response must begin with adequate educational preparation.


Joint, cooperative educational offerings between departments of social work and special education would likely reduce much of the ten- sion often felt by members of both disciplines. Many colleges and uni- versities offer pre-service programs in special education which could provide valuable information for social work students on these topics. For example, most pre-service programs in special education offer an introduction to special education which describes the common conditions requiring special educational techniques and discusses the characteristics of children who would benefit from referral. In addition, these courses discuss the range of special educational services usually available within the local school systems. With careful coordination, relevant field experience opportunities in local special education programs could be provided to social work students. This educational base would better prepare social work students for later work with families requiring services from both disciplines.

Courses defining special populations or clients with special needs should include exposure to common conditions and/or characteristics associated with developmental delay. In addition, the content area dealing with discrimination of minority groups should include the developmentally delayed. Due to the large amount of misinformation and fear about handicaps, families with a developmentally delayed member often experience discrimination. Social workers may be sub- ject to the same misinformation and fear as the general public. Social work education programs have a responsibility to be sensitive to these fears and to discuss, educate, and expose students in an effort to overcome prejudices. Clinical practice courses need to expose students to a broad array of information related to the developmentally delayed such as needs assessment mechanisms, community networking techniques, and intervention program models.

Once in the workplace, social workers and special educators should be prepared to utilize each other's strengths to develop better, more comprehensive plans for families. The types of problems experienced by families with young children with special needs necessitate role expansion for professionals from either field. Social workers have training as resource brokers, case managers, and family enablers. These are skills in which special educators receive limited training and which are critical to the development, implementation and follow-up of comprehensive service plans for young children and their families. The new federal laws governing the rights of the handicapped/delayed expanded the role of the special educator to include case management, family support and counseling as well as resource

BETTIE S. COLE, L YNDA F. PEARL, AND MARIE J. WELSCH 337

linking; the special educator is not prepared for these tasks. Clearly, a team effort with sharing of information and skills would also be beneficial to special educators.

educators have training in the ~ifferential diagnosis tech- Special niques and their interpretation. They are[trained to synthesize this

/

assessment data into an ongoing educational plan which can be im- plemented, evaluated and refined. Such information is important to social workers who are professionally involved with families trying to plan for a child with special needs. For example, a social worker who is acting as the legal guardian (as representative for the State) for a child with special needs would be required to attend his/her Admis- sion, Review or Dismissal meeting at school. The degree to which the social worker understands or seeks clarification regarding the information presented at this meeting could make the difference between appropriate and inappropriate school placement for children with special needs. In fact, many needy children may never get the special services which they deserve because no one recognizes that they should be assessed to determine developmental status. One way to address this concern is through collaborative in-service training for social workers and special educators which discuss issues such as when to refer to assessment, to whom to refer, which educational rights are protected by law, etc. Collaborative in-service training for social workers on special education issues and information is a relatively new area. There is a need for the development of high quality in-service to fill the "information gap" that exists.

Social workers, along with other professionals working with young children with special needs, face a great challenge. The place to start is with appropriate pre-service and in-service information and experi- ences which will prepare future professionals to work cotlaboratively in meeting the wide array of needs experienced by this most challenging population.

References

Chetwynd, J. (1985). Factors contributing to stress on mothers caring For an intellectually handicapped child. British Journal of Social Work, 15, 295-304.

Cole, B. & Welsch, M. (1988). Undergraduate Social Work Alumni Survey. Unpublished manuscript.

Compton, B. & Galaway, B. (1989). Social Work Processes (Fourth Edition). California: Wadsworth.

Faerstein, L. M. (1986). Coping and defense mechanisms of mothers of learning disabled children. Journal of Learning Disabilities, 19, 8-11.


Gelman, S. W. (1983). The developmentally disabled: a social work challenge. In Wikler, L. & Keenan, M.P. (Eds.). Developmental Disabilities: No Longer a Private Tragedy (pp. 12-14). Silver Springs, Maryland: National Association of Social Workers and American Association on Mental Deficiency.

Hall, J. A., Ford, L. H., Moss, J. W. & Dineen, J. P. (1986). Practicing with mentally retarded adults an adjunct to vocational training. Social Work, 31, 125-129.

Horejsi, D. R. (1983). Developmental disabilities: opportunities for social workers. In Wikler, L. & Keenan, M. P. (Eds.). Developmental Disabilities: No Longer a Private Tragedy (pp. 15-20). Silver Springs, Maryland: National Association of Social Workers and American Association on Mental Deficiency.

Ineichen, B. (1986). A job for life? The service needs of mentally handicapped people living in the community, and their families. British Journal of Social Work, 16, 311-323.

Keenan, M: P. (1983). Standards for social workers in developmental disabilities: an overview. In Wikler, L. & Keenan, M. P. (Eds.). Developmental Disabilities: No Lodger a Private Tragedy (pp. 41-44). Silver Springs, Maryland: National Associa- tion of Social Workers and American Association on Mental Deficiency.

Kurtz, P. D. (1983). Early identification of handicapped children: A time for social work involvement. In Wikler, L. & Keenan, M. P. (Eds.). Developmental Disabilities: No Longer a Private Tragedy (pp. 68-75). Silver Springs, Maryland: National Associa- tion of Social Workers and American Association on Mental Deficiency.

Parks, R. M. (1983). Parental reactions to the birth of a handicapped child. In Wikler, L. & Keenan, M. P. (Eds.). Developmental Disabilities: No Longer a Private Tragedy (pp. 96-101). Silver Springs, Maryland: National Association of Social Workers and American Association on Mental Deficiency.

Public Law 94-142, 89 STAT, 1975, 773. Public Law 99-457, 100 STAT, 1986, I145. Pueschel, S. M., Tingley, C., Rynders, J. E., Crocker, A. C., Crutcher, D. M. (1987). New

Perspectives on Down's Syndrome~ London: Paul H. Brooks Publishing Co. Quinn, L. & Pahl, J. (1985). Examining the causes of stress in families with severely

mentally handicapped children. British Journal of Social Work, 125, 501-517. Sapir, S. G. (1986). Training the helpers. Journal of Learning Disabilities, 19, 473-476. Walker, P. W. (1980). Recognizing the mental health needs of developmentally disabled

people. Social Work, 25, 293-297. West, M. A. (1978). The social worker specializing in handicapped children. In Allen,

K. E. & Schiefelbusch, R. L. (Eds.). Early Intervention: A Team Approach (pp. 269- 285). Baltimore, Maryland: University Park Press.

Wikler, L. (1983). Chronic stresses of families of a handicapped child. In Wikler, L. & Keenan, M. P. (Eds.). Developmental Disabilities: No Longer a Private Tragedy (pp. 102-110). Silver Springs, Maryland: National Association of Social Workers and American Association on Mental Deficiency.

Wikler, L. & Berkowitz, N. N. (1983). Social work, social problems, and the mentally retarded. In Wikler, L. & Keenan, M. P. (Eds.). Developmental Disabilities: No Longer a Private Tragedy (pp. 8-11). Silver Springs, Maryland: National Associa- tion of Social Workers and American Association on Mental Deficiency.

Wikler, L. & Keenan, M. P. (Eds.). (1983). Developmental Disabilities. No Longer a Private Tragedy. Silver Springs, Maryland: National Association of Social Workers and American Association on Mental Deficiency.

Wilchesky, M. & Reynolds, T. (1986). The socially deficient LD child in context: A systems approach to assessment and treatment. Journal of Learning Disabilities, 19, (7), 411-415.

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Education of social workers for intervention with families of children with special needs