Kristi Hickey-Vigilante, LCSW; Juliet Hawkins, MA
While the exact number of parents with developmental disabilities is unknown, an increasing number of them are being identified by major service delivery systems. Despite this increased awareness, their special needs have not been adequately addressed by health and social service agencies (Booth & Booth, 1994). A large number of families are falling through the cracks, and consequently, their children are being removed. It is believed that there is an under investment in the kind of services and supports that might enable individuals with developmental disabilities to be effective parents (Booth, 2000). This article will discuss some of the challenges of working with this population and how YAIs Parents With Special Needs program addresses these challenges.
YAI/National Institute for People with Disabilities has been providing services to parents diagnosed with developmental disabilities since 1990. The Parents with Special Needs program provides in-home training and a monthly support group to families in New York City, residing in the boroughs of Brooklyn, Manhattan, and Queens. The goal of this program is to prevent placement of the child/children and to preserve the structure of the family.
A main challenge of the current delivery system is determining who should be providing services to these parents. Parents who have a dual diagnosis are often rejected by both the mental health and mental retardation systems as not meeting their particular criteria.
A lack of experience/knowledge among service providers, as well as false preconceived notions about this population often interfere with successful intervention. McGaha (2002) identified several myths concerning parents with developmental disabilities discussed. The first is that it is believed that their children will also have delays. Additionally, there is an assumption that parents with developmental disabilities will have large numbers of children. Another belief is that these individuals are not adequate parents and have an inability to learn.
Parents with developmental disabilities and their children are not without risk. Our review of the literature suggests that there is a higher incidence of intellectual impairment among children of parents with developmental disabilities than the general population. This appears related to issues of environmental deprivation. Many of these families are living on fixed incomes and live in impoverished conditions. Another area of concern is that many of these parents are not prepared for parenthood or lack proper role models (McGaha, 2002). In a 1993 study conducted by the New York State Commission on Quality of Care, one-third of the families surveyed were known to have been abused or neglected as children. Half of the families in the study had a history of out of home placement. This suggests a greater need for training and support for these families.
The research concerning parents with learning difficulties identifies several barriers to successful intervention were identified. These included a tendency to focus on parental weaknesses rather than their strengths, giving support that inadvertently fosters dependency and feelings of inadequacy, and focusing on the needs of the children without taking into account the needs of the parents (Whitman & Accardo, 1993). The task of assessing parental strengths and areas of needs can be difficult with this population. However, without a thorough and accurate assessment process, the effectiveness of the intervention is severely compromised.
Individuals with intellectual impairment may already have a negative self-image. They are often told by others that their parenting skills are lacking. This may lead to lower self-esteem, which may be connected to failure to praise their children (McGaha, 2002).Parental locus of control is an essential factor. It is not uncommon for others, such as family members and/or professionals, to make decisions for these individuals. As a result they often become passive in solving problems, which can make them appear indifferent. In order for an intervention to be effective, the individual should be encouraged to participate in the decision making process.
Many of these factors have been taken into consideration when developing The YAI Parents with Special Needs (PWSN) program. The PWSN program is a voluntary, nine to twelve month, in-home training program. This program teaches individuals the skills they need to enhance their effectiveness as parents.
The Parent Training Program
Parents participating in this program must have a documented developmental disability and children that are currently living with them. Although agencies are often the referral source, we make it clear to the parents that it is their choice to have us in their homes. It is not uncommon that parents are pressured into asking for our services. For example, they are sometimes told that their children could be removed if they do not accept our service. This may compromise the parents motivation to participate in the program.
Training goals are identified with the parent instead of with the referral source. This is important for the development of trust and an effective working alliance. Frequently, the goals identified by the referral source are different than the goals identified by the parent. Once goals are agreed-upon, there are four phases to the program: (a) assessment; (b) parent training; (c) development and implementation of a structured behavioral/skills training plan; and (d) maintenance and generalization. Parents are active participants in each phase of the program. Often goals are not limited to traditional areas of parenting such as discipline and structure, but may include areas that indirectly affect parenting such as budgeting and cooking. The assessment is thorough and concrete, making use of task analyses. Parents are taught to keep data on the identified areas of need.
The assessment process includes many instruments, beginning with an intake tool that was designed by YAI staff. The intake tool gathers information about: (a) demographics, (b) complete psycho-social history, (c) strengths and areas of need for the parent, (d) the strengths and areas of need for the family and (e) environmental challenges. Further assessment focuses on the areas of need identified by the parent.
The parent/skill training phase of the intervention is designed to empower the parent. Training is individualized and takes into account the preferred learning style of the parent. Videotapes and role plays are employed to help make the concepts as concrete as possible. Behavior/training plans are developed to facilitate effective parenting skills and promote positive interactions between parent and child. For example, a morning or afternoon routine is developed, including opportunities for the parent to praise their child for completing a desired task. Other plans may include an individualized task analysis around activities such as doing laundry, cooking or cleaning.
Many families involved in the program require ongoing support. Efforts are made to access these supports before this relatively short-term intervention comes to an end. This may mean obtaining services such as case management, counseling and psychiatric services for the parent. These referrals are made only if the parent is in agreement with them.
An important component of the Parents with Special Needs program is collaboration with other family members and/or agencies involved. It may be necessary to develop a collaborative working relationship with other family members, if they are closely involved with the parent. When working with a parent with a developmental disability, one must properly assess their relationship and the amount of support they receive from other family members. Frequently, the success of the intervention depends on the cooperation of the other family members involved.
Dee was a 35-year old woman diagnosed with Mild Mental Retardation who lived with her mother and her two children. One of the goals that she had identified was improving her budgeting skills. Prior to intervention, Dees mother was managing her SSI checks. Therefore, Dees mother had to be prepared to give Dee access to some of this money if she was to work on this goal. The worker held a meeting with Dee and her mother. It was agreed that Dee would be given a monthly allowance.
One of the most important facets of intervention is facilitating communication between the parent with a developmental disability and other professionals. This includes professionals from the child welfare, the mental health, education, legal and the developmental disabilities systems. It has been our experience that many of these families are involved with multiple systems and are often overwhelmed by the advice that is given. Furthermore, when several providers are involved with a particular family, there is often poor communication and co-ordination (Whitman & Acardo, 1993). This creates confusion and interferes with the quality of services that these families receive.
Ricky was a forty-year old single father diagnosed with Mild Mental Retardation and Generalized Anxiety Disorder. He was referred to the PWSN program for training in money management and parenting. At the time of the referral, he was involved with the following agencies: Office of Mental Retardation and Developmental Disabilities funded case management; Association for Child Welfare Preventive Services; medical/mental health services for his son; medical/mental health services for himself; homemaker services; and his sons school. He was receiving contradictory advice from a professional from each one of these agencies. His case manager was assisting him with finding a vocational program while the ACS worker was telling him that he should stay home with his son. The guidance counselor at his sons school was referring his son to one after school program while his sons medical social worker was referring him to another. This confusion made it difficult for Ricky to make his own decisions and fostered dependency. The PWSN program decided to sponsor a case conference to clarify each persons role. This gave us the opportunity to educate other agencies about our program and how best to empower Ricky. It is not uncommon for professionals to take over rather than encourage the parent to make his/her own decisions. Subsequently, case conferences are now an integral part of the PWSN program.
The YAI/Parents with Special Needs program is a time limited intervention. Funding for an expansion has been limited. We have built in other supports by utilizing YAIs Article 16 Clinic. A weekly support/therapy group is offered to parents who have completed or are on the waiting list for in-home services. The group setting gives parents the opportunity to support and learn from each other.
It is our belief that the YAI/Parents with Special Needs Program is an effective model for working with parents who have developmental disabilities. The need for this type of service and other supports continues to grow. Many families continue to be served by generic agencies that do not have the resources to meet these needs. Therefore, the preservation and integrity of these families continue to be at risk.
For more information, contact Juliet Hawkins, M.A., at firstname.lastname@example.org
Booth, T., & Booth, W. (1994). Parenting under pressure: Mothers and fathers with learning difficulties. Buckingham: Open University Press.
Booth, T. (2000). Parents with learning difficulties, child protections and the courts. Representing Children, 13, 175-188.
McGaha, C. (2002). Development of parenting skills in individuals with an intellectual impairment: an epigenetic explanation. Disability & Society, 17, 81-91.
New York State Commission on Quality of Care for the Mentally Disabled. (1993). Parenting with special needs: Parents who are mentally retarded and their children. Author.
Whitman, B., & Accardo, P. (1993). When a parent is mentally retarded. Baltimore: Paul H. Brookes.