Who's Minding the Children?

Child Contact and the Neurologically Impaired Parent

Sheila Jennings Linehan, Barrister, Solicitor and Mediator, and Jan Schloss, Family Mediator, Child Protection Mediator, Custody Assessor, Parent Coach, Certified Professional Coach, Adjunct Faculty Adler School of Professional Coaching
Forty years ago in Canada, child abuse and neglect were not the known entities that they are today. Professionals and families were largely unaware of most child protection issues. With increased knowledge, there has been ever broader classification .of the many kinds of child abuse and neglect that exist. Child welfare, however, is not a static entity. We have only recently learned, for example, that inter-spousal violence is very harmful to children who see it. Also, we have only very recently put a child protection policy and guideline in place in response to this new knowledge. One thing we have learned from this newer classification of child abuse (witnessing domestic violence) is that children may be harmed inadvertently by adult problems. Parents with certain kinds of neurological problems inadvertently place their children at risk of emotional and physical harm. The intent to harm is usually absent. We call this organic child neglect and abuse. core tasks of parenting. If a parent cannot carry out his or her responsibilities under a parenting plan, that fact will need to be looked at. In the current schema, parent 'rights' are at the forefront of any discussion. A different focus will appear in case-law following this paradigm shift; one that leaves parental entitlements foUowing children's rights rather than the reverse. The Canadian Department of justice's news release on Bill C-22 stated: 'The "best interests of the child" has been the core principle of family law in Canada for some time. In this reform strategy, this core principle is reaffirmed and strengthened by adding a list of best-interest criteria to the Divorce Act. The list will help parents, family justice professionals and judges determine the child's best interests in his or her unique circumstances ... The proposed amendments to the Divorce Act will allow for a greater variety of parenting arrangements and will carry no presumption in favour of anyone mode of parenting arrangement. All arrangements however shall be based upon set criteria regarding the best interests of the child. This new direction in Canadian matrimonial law shifts the focus in post-separation proceedings away from parental rights towards the rights of the child. Best Interests includes the child's own interests and preferences, the emotional and psychological needs of the child and other factors."

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The law
A search of our Canadian legal databases has failed to identify a reported custody or a reported child protection case where neurological illness in a parent has been the determining factor in either a custodyl access or child protection decision. In fact, the databases fail to identify a case naming neurological illness as a factor in any decision. Remarkably, then, in Canada we have no legal precedent on neuropathology and parenting capacity either in the custody or child protection case-law (unlike in the UK). Nor is there Canadian child welfare legislation that specifically targets the issue of what happens when a parent suffers from, or submits to, a disabling neurological disorder that impacts negatively on parenting capacity. There is then, in Canada, a state of legal limbo in the area of parenting with a neurological disorder. I The Canadian government is currently involved in an innovative child-centred justice initiative.' Part of the new focus in family law will be a post-separation and post-divorce model based on parental responsibilities rather than the old access versus custody paradigm. We submit that this paradigm shift will enhance post-divorce child well-being. It will also force to the table an examination of the kinds of issues that we raise in this article, namely of parents who have impairments that prevent them from carrying out

The presentif'Jg problem

The area of parenting capacity and neuropathology is little researched in the fields of family law and social work. Parents with neurological impairments and attendant psychopathology who appear before lawyers, social workers, psychologists, mediators or assessors do so as if their pathology were invisible. What makes this quite disturbing is that after a separation or divorce, many children will be living with a parent with a neurological impairment. Such a parent ~ither lacks the capacity to: (1) (2) protect the child from emotional or physical harm; or adequately perform the daily tasks of

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parenting to ensure the child's physical and emotional wellbeing. Some children will undoubtedly wind up in the care and control of the parent who has the impairment. Also, undoubtedly, a percentage of neurological disorders that have a deleterious effect on parenting capacity will go undetected by professionals who work with families, be they lawyers of mental health clinicians.

(2)

those that may not as seriously impact on capacity to parent and thus may only require simple accommodations.

Some examples of neurological disorders in the first category are: Asperger's syndrome; high-functioning autism; narcolepsy; pervasive development disorder, not otherwise specified; right hemisphere syndrome; the dementias, including early-onset Alzheimer's disease; traumatic brain injury; co-morbid clusters like T ourette syndrome combined with obsessive compulsive disorder and non-verbal learning disorder; certain behaviour-affecting brain rumours; and certain kinds of epilepsy.

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Literature on capacity of parents

with neurological problems

A lengthy literature review on this topic is not possible because there are only a few publications on this crucial family law and disability law topic. The following articles address some of the salient points documenting how such problems pose difficulties: Thaddeus P. Ulzen and Russell Carpentier, 'The Delusional Parent, Family and Multi-Systemic Issues' (1997) 42(6) Canadian Journal of Psychiatry;' Dr V. Young, 'Encounter's With Asperger's Syndrome in the Solicitor's Office' [2001] Fam Law 695; Nicole Hackett and Lyn Henderson, 'Asperger's Syndrome and Child Contact' [2002] Fam Law 119; and District Judge John Mitchell, 'Contact and the Unusual Parent' [2003] Fam Law 169. The following two issues noted in these four publications are relevant to this topic: parents with a neuropathology may exhibit marginal parenting capacity, andlor may not be able to parent in the best interest of the child's emotional and physical well-being; and for the most part, children in such families have the lonely tasks of self-parenting, whether the family is intact or living apart.

Some examples of neurological disorders affecting parent capacity in the second category are: attention deficit hyperactivity disorder; Parkinson's disease; early stroke multiple sclerosis; simple epilepsy; dyslexia; dyscalculia -language disorder/visual spatial disorder; and dyspraxia.

Currently, with lack of recognition of the presenting problem overall, social agencies and organisations are ill-equipped to provide the kind of support andlor interventions that these families often require: namely medico-legal services. In families that end in separation or divorce, and where there are mental health or neurological issues in parents, the interests of children are best served by a collaborative approach of professional involvement from a variety of disciplines.

Parents with disorders in the first category may be very high functioning but their children are at risk as a result of a variety of parental neurological problems. It is also important to note that parents in this category may suffer from other (co-morbid) problems as a result of their primary problem. Parents on the autistic spectrum, for example, are frequently depressed, anxious, and many self-medicate.

Custody disputes
Either before or after custody and access have been decided upon, some parents will resort to the judicial system to change child access. For instance, a parent may decide to make an application to the family court to restrict, deny or have a supervised access order put into place where the neuro-rypical parent has concerns about the other parent's parenting. Often, in cases where there is a neurological problem in one parent, for example if one parent has Asperger's syndrome, the other parent will find themselves in court attempting to convince a judge that that patent is unable effectively or reliably to fuIiI the tasks of day-to-day parenting or to deal appropriately with the children in ways that speak directly to the impairments of this disorder. This is no easy task.

Neurological impairments
affecting parenting
For the purposes of this discussion, we separate neurological problems into two categories.'
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those with attendant psychopathology impacting significantly on parenting capacity that requires various levels of intervention; and

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A significant problem that remains is the fact that, in most jurisdictions, the judiciary has not had the opportunity to learn more about the ways in which neurological dysfunction aggregates in affected families. Neither have they had the opportunity to learn how it impacts on parenting and child welfare. There are also some concerns about misuse of the diagnosis to discredit suitable parents by high-conflict divorcing litigants.

with neurological

Testing for capacity of parents impairments

Privately ordered separations the separation agreement

and

In cases where there is a neurologically impaired parent with attendant psychopathology, there may be a negotiated settlement either through the case-management system or outside the courr." A high percentage of separation agreements made by parents with neurological impairments break down.' By and large, the neuro-rypical parent becomes increasingly concerned over time about child safety and other parenting issues. Most often this will be denied - or just not seen - by the partner with the neurological impairment. What often ensues is a flurry of motions brought forward by each party, which may continue for years. It is costly for the parents, the judicial system and those professionals working with the family. The court dance becomes increasingly stressful for all involved and outcomes are often unpredictable. While all this chaos is taking-place, the children are left in a state of psychological and physical Limbo that can go on for years.

The child custody assessment

Parents who exhibit a high degree of conflict while going through separation and divorce become entrenched and polarised regarding rime sharing and decision making for their children. Referral for a custody/access assessment may be either court ordered or voluntary. In an effort to resolve separation conflict, sometimes, parents who are neurologically impaired will be among those who present in the offices of the custody assessor. It is incumbent upon assessors to be aware of the potential impact on parenting when there is a
parent or child with neurological impairment.

Currently there are no specific systematic studies that look at the kinds of testing that might be available to determine problem areas in parenting for adults with neurological impairments. What is needed is the development of a prognostic test to aid in determining the level and type of parent support required where a parent has a neurological impairment. For example, if a neurologically impaired parent who has never parented on their own prior to separation and is requesting time sharing with the children on their own, certain questions must be asked and answered by involved professionals according to that parent's neurological profile. The main issue to ascertain is what kind of accommodation is required regarding their particular disorder and, critically, level of impairment with that disorder, so that children can be appropriately in the care and control of that parent. The parent with high-functioning autism may 'forget' about his child's and his own impairment, and the consequent danger of, for example, water to his electively mute epileptic child.' He may miscalculate the degree of risk posed to this child while in the water. Parents on the autistic spectrum frequently have difficulty gauging degrees of risk, something that is second nature for most parents. The risks posed to the child then are both child-dependent and adult neurological profile-dependent. In this local case the child has epilepsy and is electively mute with mild signs of pervasive development disorder. The autistic-spectrum father forgot about her once they were underwater and swam off. Since we have noted that neurological problems aggregate in families, it is not difficult to see how risk is cumulative for the children in such family settings. Empirically based assessment tools should be able to address the specific and often paradoxical degree of impairment in, say, a father with high-functioning autism or Asperger's syndrome. He may be the chair of a university physics department, but without a sense of time, without the ability to self-organise due to his dsypraxia or
to multi-task,

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Child custody assessors can generally see that a young child should not be left with a grandparent who suffers from Alzheimer's disease (a dementia). However, they may not see quite so clearly that early-onset Alzheimer's or a different dementia in one or other parent poses almost identical safety risks to the child, especially the young child. Some parties who decide to order their separation privately (mediation, collaborative divorce law, and lawyer-lawyer negotiations) discover, only post-agreement, the enormous challenges of trying to co-parent when one party has a serious neurological impairment. This parent may not be up to the task of fulfilling his obligations under the parenting plan and the children in these cases will have suffered the consequences.

can he get a child to daycace on

time? Many such parents' appear more than competent in spheres other than parenting. Their parenting problems continue to elude most assessors (let alone practising family lawyers) who are unaware of how neurological disorders manifest themselves and impact on parenting capacity. We do a disservice to children when we do not pick up on these kinds of problems and we suggest that neurologists, neuro-psychologists and psychiatrists collaborate with social workers and family lawyers so that this child welfare issue may be better addressed in the future, both in privately ordered separations and in the family court setting. We note the value in a system such as that described in the article 'Judicial Case Management

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and the Custody Access Assessment: Melding the Approaches'," where there is case management with a built-in settlement conference process that operates with a family court clinic. For the situation that arises from time to time, where the neurological problems of children or parents (or both) are a major factor in the custody dispute, such a collaborative approach to family separation and related disputes would be invaluable. Family court clinics would ideally have neuro-psychologists, psychiatrists and neurologists on board as consultants to assist the legal profession and social work profession with parenting issues that invariably present falsely as litigiousness.

they would be taking child welfare a step forward in an area it has not, as yet, approached in Canada.

NeurologicaJ disorder is

not mental illness

Current family law thought appears to categorise neurological disorders erroneously with mental illness. Individuals with high-functioning autism, brain injury or Asperger's syndrome certainly experience problems that impact on their parenting, but few can be accurately described as having a DSM-JV (Diagnostic and Statistical Manual of Mental Disorders) 'mental illness'. Although Asperger's syndrome is a neurological disorder, it appears in the DSM as a result of the varying accompanying psychopathologies that sometimes accompany the disorder. Neurological status in a parent merits its own parent-capacity classification and nomenclature. It ought not to be thought of by professionals as a mental illness or a personality disorder. It is neither. For this reason, interventions for mental illness are inappropriate and ineffective. Ideally, in situations where the parents are being seen for a child custody assessment, or are working with a family mediator, the parenting plan should incorporate recommendations from mental health professionals based on the types of empirically based testing that we are suggesting here. At this time, because such testing is lacking, it is, tragically, the children's needs that are overlooked. We submit tbat these children are suffering with organic neglect and, sometimes, abuse.

The children's lawyer and child representation

In cases where there is a more serious neurological disorder with an attendant psychopathology, or where there is both a parent and a child with a neurological disorder, there ought to be involvement of a children's lawyer to ensure that the requirements of the best interests of the child are being met. The challenge in the current system is that parents' rights are at the forefront of a dispute and in most of these cases no one is acting for the child. Where there are neurological problems in either the parent or in the child, the best interests of the child must take precedence. In this way we are honouring the rights of the child. As with child custody assessors, the Office of the Children's Lawyer needs to become versed in the parent capacity issues that affect children and parents with more serious neurological disorders. By this we are referring to those disorders where most often it is the child and the parent who are affected and we note that neurological problems frequently run in families. When this occurs it is a gargantuan parenting challenge to the neuro-rypical partner, who is faced with insurmountable obstacles with respect to co-parenting. In the province of Ontario, the Office of the Children's Lawyer becomes involved in cases where lawyers ask judges to make the order for the Office to consider their involvement. Once involved, the Office of the Children's Lawyer assigns either a social worker or a lawyer to undertake a complete assessment of the child's situation with regard to the legal proceedings. We consider this of utmost importance for the very reasons that Ulzen and Carpentier note in their important article: 'Institutions providing service for such families may have different standards of intervention or mandates (for example public health nurses and social workers). This results in role-boundary diffusion and interagency conflicts that impede progress and can result in a dangerous situation worsening."!

Conclusion
Children cared for by parents with neurological disorders may be at risk, especially when that parent is the sole caregiver with no, or minimal, in-home supports. It is incumbent upon family lawyers and child custody assessors to ensure that neuro-appropriate parenting assessments are administered where indicated. For this to happen, psychologists and neurologists need to collaborate to develop a neuro-appropriate test to measure parenting capacity in parents with neurological problems: In families where there are affecting neurological problems, lawyers ought to resort to court to ensure child safeguards are put into place where this cannot be accomplished privately. Finally, a request for the involvement of the Office of the Children's Lawyer may be appropriate to' assess and/or advocate on behalf of [he children of such unions when parties separate or ~hen the neuro-typica1 parent dies or abandons a child, leaving that child in the care of a parent with neurological disability. Given the high rates of depression and breakdown of marriages associated with individuals with neurological disability, this may not be such a rare situation. Where all of these occurrences take place, we must ask the question: how will this parent be keeping the children in

If the Office of the Children's Lawyer could

turn

their gaze to families with neurological problems,

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It has been suggested in 'The Parent With Neurological Disorder: Are the Children at Risk?' ([2003J Sept Ontario Association of Children's Aid Societies Journal) that child welfare legislation ought to make reference to this issue. [2003]1 The Family Justice Newsletter, (Department of Justice, Canada). at pp 2-3

Minister ofJustia Annourn:es Child Centered Family Justice Strategy (Department of Justice, Canada, Press Release), 10 December 2002. Some delusional parents are mentally ill, while others have a neurological disorder. While acknowledging that tills division is not all that accurate, it is useful in a preliminary discussion such as this one. See S. Jennings Linehan, 'Special Needs Practice Issues for Ontario Mediators' [2003] Winter Solutions, at pp 2-4. there have been cases where ever-increasing restrictions have been placed in access agreements piecemeal by judges over time with each new child-safety incident that occurs. Unfortunately the child must face the harm fust and then the neuro-typical parent succeeds in getting the restriction.
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An example drawn &om a Canadian couple where both the professional father and child were neurologically impaired but where the marriage was intact. In this case, the mother watched from a boat as the father swam away from his electively mute and epileptic child in tropical waters, The mother had given a clear instruction for the father not to leave their daughter's side. Having Asperger's syndrome, the father, in his eagerness to dive, 'forgot' the mother's instruction. Thaddeus P. U1zen and Russell Carpentier, 'The Delusional Parent, Family and Multi-Systemic Issues' (1997) 42(6) OznadianJouma/ of Psychiatry 617, at p 619. J. Leverette et ai, 'Judicial Case Management and the Custody and Access Assessment: Melding the Approaches, (1997) 42(6) Canadian Journal of Psychiatry 649. Ulzen and Carpentier, op cit, n 9, at p 619. W. thank Margot Nelles, director of the Asperger's Society of Ontario; Karen Rodman of Families of Adults Afflicted with Asperger'. Syndrome (USA); Ms Carol Grigg of ASPOUSE (Australia); and Judy Singer of ASpar (Australia). We are also grateful to the families in the Ontario area struggling with numerous parental neurological issues, who helped US gather important factual information for this article.

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In Ontario,