Dr. Tiegerman Speaks

Families of children with disabilities experience unique problems that extend from one generation to the next.  Within the typical family, parents distribute their time between themselves and across their children in a fairly equitable manner.  But when there is a child with a disability, everyone within the family focuses a disproportionate amount of time away from themselves and away from each other to meet the needs of this specific child.  The imbalance within the family often creates a great deal of stress and tension, particularly for siblings who initially may not understand their parents’ behaviors and actions.  Siblings of children with disabilities may be ignored given the extraordinary needs of a child with a disability.  Typical children may experience ambivalent feelings towards their sibling, their parents and themselves.  They may also feel guilty as they grow older about their negative responses towards their parents and their family situation.  It is very difficult to understand as a young child why your parents do not have time and/or patience when they appear to have an unlimited amount of both for another child.  As the typical sibling grows older and becomes aware of why his parents have been so stressed, angry and/or frustrated, a sensitivity develops that goes beyond his years.  There are also greater expectations for typical children to grow up quickly, become independent and ultimately become responsible for the life-long care of the child with a disability.  Many siblings of children with disabilities are faced with the reality that they have not had either the same family life or childhood as their peers.  They have grown up in complex families in which the search to find appropriate social, educational and medical services becomes a “mission.”  The pressures within the family are unusually high and feelings follow the progress and development of the child with a disability.  Events at home may be chaotic and noisy when children with disabilities have behavioral problems and/or unusual sleep patterns.  In fact, most siblings of children with disabilities grow up and take on the responsibilities of their parents to manage the social, medical and financial decisions that an adult with a disability cannot make on his own.  Many parents are frightened and overwhelmed by the possibility of child as well as adult abuse in residential and institutional settings.  Parents ask, “What will happen when I’m not here?  Who will take care of and protect my child’s interests?”  Most typical children eventually commit to the care of a disabled sibling with love and understanding after watching their parents’ daily struggles.  Some siblings struggle with the difficulties of being an adult child and may be resentful about the loss of their own childhood.  As a result, it is important to provide family based services which include the siblings of children with disabilities.  Typical children need to learn to accept not only their own feelings but their family differences because the responsibility of caretaker is a life-long commitment.  It is important to include typical children in counseling and therapeutic services so that they can be part of the family’s decision-making process.  Their voices need to be heard and their feelings need to be factored into the family mix.  By empowering typical children, emotional growth about the family process is facilitated.  In an effort to keep families together, clinical and educational programs should work with community organizations to develop siblings’ groups.  Families today are faced with extraordinary social, emotional and financial pressures.  To create a family balance, every member of the family must be acknowledged as a participant and a contributor.  Typical children who assume the responsibilities of a sibling with a disability are a credit to their parents and a blessing to their families.   

The Individuals with Disabilities Education Act (IDEA) which specifically states that a child with disabilities must be placed in an appropriate program based on his individual needs by a Special Education Committee in collaboration with his parent is being slowly and systematically undermined.  There is a major national crisis facing children with disabilities and their parents that is frightening in its scope and implications.  The work of decades by parents and advocates will be chipped away until IDEA becomes a meaningless law for children with disabilities.  And what does it all relate to?  CAPs. 

What is a CAP?  It is a quota.  The issue of CAPs does not relate just to children with disabilities.  If allowed to stand, CAPs will proliferate within and across states throughout the nation.  CAPs are dangerous and their impact on children with disabilities is emblematic of what will eventually happen to other social service programs.  CAPs exist in many states and in many different forms.  They provide the mechanism for governmental agencies to limit services.  The public needs to understand what happens when the government decides who will or will not receive services.  What is the origin of the CAP?

In New York State the Legislature in 1995 established a moratorium on the expansion of preschool education programs.  Since this population consists of very few children, it did not receive that much attention in the press or from the general public.  The New York State Education Department then took that preschool legislation and expanded it to include elementary, middle and high school special education programs without approval of New York Senate or Assembly.  Again, children with disabilities receiving services represent 7-8% of the population of children attending school, so their plight received very little attention in the press or from the general public.  But, the lack of objection to the concept of the CAP has sent a signal that its imposition could be generalized to other agencies. 

The danger to programs and services outside of education cannot be underestimated.  It is important to understand that the events in New York State over the past decade emphasize the immediacy of the issue to other states.  The legislation for preschool children sunset but the program CAPs were expanded and remain in place today.  One legislator when asked about the legality of the CAPs actually said, “There is nothing that can be done since CAPs are now the law.”  Let us recollect that racial laws were also in place for many years.  Does this statement mean that laws can be justified by their longevity?  With the imposition of the special education CAP, placement is based on program availability rather than on a child’s individual needs.  A special education committee cannot place a child in a program if its CAP has been reached even when it is appropriate.  In essence, all programs become the same with this service model, since if one is closed a parent can find another that is open.  But of course, we know that this is not true, all programs are not the same.  Programs serve different populations, they provide different services and they have different educational philosophies.  So, who cares?  Let us consider the following scenario.

Your father has a heart attack and you decide to take him by ambulance to hospital “A” which specializes in cardiac care.  The ambulance is turned away because that hospital has a CAP and you are told that the only other hospital that is open is hospital “B.”  This may, in fact, be a wonderful institution but it was not your choice, it does not specialize in cardiac care and it does not have the services that your father really needs given his individual problems.  The general issue that readers need to consider is the role of government and the level of interference in family decisions.  What right does a governmental agency that has never seen your father or someone else’s disabled child have to determine what services your family can receive?  I am certainly not saying that parents of children with disabilities can have unlimited choices.  I am saying that there is a system in place which has safeguarded the decision-making between professionals and parents.  This process has been replaced by someone in a governmental agency who has never seen the child and never read his evaluation reports but determines his placement based on a CAP. 

If we do not protect the rights of children with disabilities to receive services based on their individual needs without interference, influence and pressure from the state, then beware.  CAPs are going to proliferate across governmental agencies and to other states.  If left unchallenged by special education advocates in New York, there will be CAPs for social service and healthcare programs.  CAPs for programs serving infants, children, adults and the elderly.  CAPs for programs serving the homeless, the mentally ill, the addicted, the hospitalized, on and on.  Maybe you do not need any of these services – now.  Maybe no one in your family requires any of these services – now.  But be clear, that CAPs are creeping silently like weeds into governmental decision-making. 

Do you even know if CAPs are being used by state agencies in your state to limit educational and/or social service programs?  When a state agency has the ability to establish CAPs which are not based on children’s needs but rather on an arbitrary number or percentage, the Individuals with Disabilities Education Act is weakened.  If any of you remember the children’s story “Caps for Sale” by Esphyr Slobodkina, then you know that the monkeys in the story wearing the caps proliferated.  Let us hope that this call to action encourages advocates to be more proactive and the public to be more aware nationwide.  Otherwise, we will be the monkeys in the story living with the CAPs and a level of decision making that gives governmental agencies the ultimate control over who receives services in our families.

Ellenmorris Tiegerman, Ph.D.

                                                                                    Founder and Executive Director

                                                                                    School for Language and

                                                                                    Communication Development