Beverly was attending evening classes at the local community college but ever since Jeffrey was born she has been unable to find a reliable sitter. This has also meant that she no longer attends the social events at the local community center, something she used to do twice a month. They do have childcare, but they were not comfortable taking care of Jeffrey.
Jeffery was referred to early intervention services by the public health nurse (who was following him due to failure to thrive) for significant developmental delays primarily in social and motor skills. He does not make eye contact or engage others. He is extremely irritable and cries much of the time and does not sleep through the night. His lack of weight gain continues to be Beverly's primary concern. One incidence of a broken arm that was not completely explained was reported and child protective services have been following the family. Some people have voiced concern that it may have been caused during a fight between Beverly and Ed.
Beverly is a very caring mother. She is gentle and attentive with her children and appropriate with discipline. She is finding it very difficult to pull everything together and do what needs to be done to get access to the resources she needs. She either postpones making calls or filling in forms or just forgets to keep appointments when other concerns come up. She receives cash benefits, food stamps and medical assistance as a welfare recipient, but has not availed herself of Women Infants and Children (WIC) and other possible benefits such as Supplemental Security Income (SSI). Just getting out to shop for groceries is a problem. She has to take a bus to get to the grocery store and trying to negotiate this with the two children is exhausting.
One week ago the landlord threatened to evict Beverly and the two children because Beverly was two months behind in the rent. Beverly knew this was a problem and had been thinking about moving to a place with lower rent, but was too overwhelmed to act on the thought. Besides, she couldn't see how looking for a place with lower rent would help her feel more safe.
SOURCE: Reprinted with permission from Rosin et al. Pathways 1996.
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To understand families who have multiple challenges, it is helpful to adopt a family systems perspective. There are five concepts basic to a family systems perspective. They are:
1. The family as a system is more than the sum of its parts.
2. Change in one part of the family affects the entire family system.
3. Subsystems are embedded within the larger family system.
4. The family system exists within a larger social and environmental context.
5. Families are multigenerational.
The family system perspective provides a useful background for understanding how the care for a young child with special needs in a family facing multiple challenges interrelates to the dynamics at play within the family and within the larger society.
Family development is another important perspective. According to the family development literature, family systems develop over time. Family development is the process that brings about changes in families in response to triggers such as changes within and between family members, life cycle events such as birth and death, and/or changing resources. The way a family responds to such circumstances promotes some type of developmental change in that family. While the current models of family development include life events that may not be sufficient to describe patterns in families with multiple challenges, it is reasonable to expect that all families go through some type of development.
Paranormative family events are those that do not generally happen to a majority of families:
" The birth of a baby with developmental disabilities or exceptional health care needs is an example of a paranormative events. The baby's family experiences all of the normative activities associated with having a new family member, yet simultaneous experiences the paranormative challenges involved with meeting the baby's special needs. " - Brookes
In a family which is already facing a number of problems or challenges such as mental health, drug or alcohol problems, the birth of a child with disabilities or special health care needs may or may not be perceived as paranormative. It may be just one more challenge added to a long list of challenges.
Beverly's story: Proceed With Caution illustrates the multiple challenges some parents of children served by Birth to 3 may be having. The challenges are evident: potential domestic and child abuse, reliance on public assistance for survival, lack of appropriate child care, and transportation barriers, to name a few. Yet the strengths are also present. Beverly is a caring mother. She has in the past committed to increasing her formal education through evening classes. Apparently, she misses appointments and doesn't initiate contacts to secure additional resources because she is overwhelmed with her life, not because she does not care.
The way a family responds to a child's special needs may depend on where a family is in meeting it's own needs. The family hierarchy of needs pyramid is another tool that may be helpful in understanding how family members may respond to certain circumstances. (See last page.) This pyramid was adapted for early intervention from Maslow's Hierarchy of Needs model by Mikus, Benn & Weatherston (1994). Where a family is in meeting the needs of its members has direct implications for how they participate in early intervention for their child with special needs. If a family is struggling to meet basic needs for physical well-being and safety, members may not have the personal or financial resources to focus on more than the basic needs of their child. Making appointments, practicing skills at home or attending to optimal positioning may not be feasible within the realities of the family's current circumstances.
The challenge to those who provide services to Beverly's family and others facing equally challenging circumstances is to find ways to identify and build on strengths. From an early intervention perspective the issue is giving all families of eligible children the opportunity to participate in early intervention. That includes finding ways to make is possible for families who have multiple challenges to participate. The principles of family-centered care and building partnerships apply to families who have multiple challenges, but the applications and interpretations may look different and the measures of success may vary. Not moving for a month or attending 3 appointments may be measures of great success.
Sometimes service coordinators and other providers may have difficulty knowing when to encourage a family’s participation in early intervention and when to recognize and support a family’s decision not to participate in early intervention, perhaps because of other basic needs and priorities. Service coordinators may want to enter into relationships with families who have multiple challenges by assuming early intervention has something to offer the family and child, and believing that what happens in their partnership may make a difference. For example, families who are homeless have children who could benefit from early intervention just as much as children with more secure homes.
Advice from a colleague who has worked with many families who have experienced multiple challenges focuses on maintaining an optimistic vision, while also doing constant reality checks. She suggests that service coordinators may want to ask themselves an ongoing series of questions such as:
· Am I making a difference?
· Do I have anything to offer this family?
· Would this family be better served if we called upon others to help?
· Is the safety risk I'm taking worth the potential benefit?
· Am I spending too much time on crises with one family at the expense of others?
Service coordinators again need to know their own boundaries and the scope of services that early intervention can and cannot offer to families. Service coordinators who deal with families who have multiple challenges will likely find themselves seeking out information about service systems that offer support and assistance for the various problems families may encounter. For those in early intervention, some of these service systems may be more familiar than others. Helping a family secure food or housing, sign up for a GED (high school equivalent degree) or apply for welfare may be new experiences for service coordinators. Working with police, child protective services workers, alcohol and other drug abuse (AODA) counselors, and other mental health counselors may not be what you thought you would be doing when you chose to go into early intervention.
You may be faced with time-consuming as well as ethically complicated situations. For example, you may find yourself in a situation where you have to report a family for child abuse, just when you thought you were making inroads into a relationship; or you believe a child would benefit from intervention, but the family is choosing not to participate. Although the required legal responses may be clear in these instances, the ethical considerations may make your actual response more complicated.
An analysis of interviews with mothers of low socioeconomic status reinforces the importance of taking time to listen to, understand, and respond to what families are saying (Gamel-McCormick 1995). The study found that the mothers who participated in the interviews counted on service providers to make connections and help them understand services offered and procedures for accessing them. Skills for accessing the services that support families with multiple challenges are similar to those for accessing other services. For some service coordinators the new learning may be in discovering what resources and services are available. It would be helpful to know what services are available in your community, how to access them, whether or not there are waiting periods or waiting lists, costs and methods of payment (for instance, does the agency accept Medicaid payments?), and commitments required (is a family’s participation voluntary or required by an action such as a court order?). Service coordinators are encouraged to get to know the people and their work. One strategy is to request training for yourself or your team from service providers from other programs such as a child protective services worker, a police officer, or an AODA counselor.
Most service coordinators at some point become involved with families who have multiple challenges. Such families on a service coordinator’s caseload may vary from a small percentage to a large majority depending on the community the program serves. Regardless of the numbers, service coordinators often report feeling like the families with multiple challenges take up a significant amount of their service coordination time. It is important to maintain a perspective on what aspects of a child and family’s life you as a service coordinator in early intervention can influence. In some instances a service coordinator’s best intentions and efforts may still not be enough to involve a family in early intervention for their child.
The findings from Gamel-McCormick’s research may (1) help service coordinators gain insights into the behaviors and practices of service providers that some mothers facing multiple challenges found helpful; and (2) act as a reminder that families try to do the best they can for their children (Gamel-McCormick 1995). Gamel-McCormick interviewed twelve mothers who had children in early intervention, were head of their household, and were from a lower socioeconomic background to learn about their perceptions of the early intervention services they received. The mothers who were interviewed clearly valued the same things as families facing fewer challenges. They had wishes, hopes, dreams, and fears for their children. The following comments, which are organized around five themes-respect, guidance, working together in teams, functional services, and linkages-convey the sentiments of some of the mothers interviewed. (Comments are reprinted with permission from Gamel-McCormick 1995 and from the transcripts of the original interviews.)
RESPECT. The mothers felt service coordinators need to respect their children, their families, and their lives.
See, they are fine people. They do care. They don’t judge you or check up on you. They take you as you are. You don’t have to be a million dollar person. They make you feel like you are somebody.
Shelly was good because she seemed concerned about not only Armond’s problems but mine too, and well, she, they were always worried about how I felt about stuff, too.
She’s not hearing everything that I want, this other lady. Finally I find that I don’t need to listen to her if she’s not listening to me.
GUIDANCE. Many of the mothers said they needed information that would allow them to work better with their children. They also asked for guidance about what could happen to their child and options that would allow them to choose how they got involved.
Don’t tell me what to do. I can’t learn nothin’ if I’m always bein’ told to do stuff.
If we had a bad week or something, you know, if one of the kids was sick and they had been sick all week long back and forth to the hospital, I could call them and say “well, let’s wait until next week for this appointment because it’s not been a good week.” And they was always understandable.
WORKING TOGETHER IN TEAMS. Several of the mothers highlighted the importance of listening to parents and considering their opinions. Some commented that mothers have critical information that is necessary to provide effective services. They asked that providers not ask the same things over and over and that they be consistent in recommendations.
They had better be listenin’ to me. I know my baby and what I want. I’m not being ugly, but they need to be listenin’ to me.
Nobody ever said, “Well you gotta do this” even though I didn’t want to do this. I always had the choice of whether I wanted that or what. But we never ran into any problems about that though, because everything we were doing was the right choice.
FUNCTIONAL SERVICES. Several mothers commented on the importance of helping their children learn skills immediately (for example, how to pick up toys or communicate needs) and especially ones that would increase their child’s independence.
It was simple… I could finally make dinner without yelling at my kids.
LINKAGE. Several mothers commented on the importance of getting connected with programs to help them meet their goals for their children (for example, getting in public schools, having adequate clothing and food). Another major area was help in understanding the procedures of agencies.
They are real good about makin’ arrangements and appointments and makin’ sure after each time that everything went OK and that I understand everything.
These comments and insights underscore the importance of applying family-centered principles and basing early intervention services on family priorities. Early intervention can make a difference, and service coordinators can play an important role in seeing that practices are adapted to fit the particular circumstances of each family. Service coordinators need to find very specific ways to show respect, make sure recommendations are consistent across providers and agencies, carefully examine the number of people involved with a family, work effectively across agencies and disciplines for a consistent program, and link families with support services and resources. Service coordinators need to apply basic communication skills to establish relationships with families and find realistic and meaningful ways to engage children and families in early intervention. In the end, what is important is to be able to look back and say, “ I did my best.” I did my best to establish a relationship based on trust; I did my best to work with what the family presented; and I did my best to overcome barriers and help families access and participate in early intervention services for their child with special needs.
Excerpted from: Tuchman, L., Robbins, S.(1997). Course Guide for Social Work C896-200: Pathways to Effective Service Coordination for Families of Infants and Toddlers with Disabilities. Developed by the Pathways Service Coordination Inservice Project of the Waisman Center Early Intervention Program.