Should parents with disabilities be allowed to keep their kids

A ruling in the US state of Massachusetts has raised the debate on whether parents with disabilities should be allowed to keep their children. Today Parent writes about a mother who won a 2 year battle to have custody of her baby who was apprehended by child protection soon after birth. This is an important decision when considered as part of the larger discussion about how people with disabilities are treated in our society.

This mother has what is called, "mild intellectual disability." Such a person would have a number of functional strengths along with some deficits. Yet, as the article notes, the odds are heavily stacked against persons with disabilities:

An estimated 4.1 million parents have disabilities in the United States — roughly 6.2 percent of all parents with children under 18, according to the National Council on Disability. Removal rates for children whose parents have an intellectual disability can be 40 to 80 percent, the council estimates.

I am of the view that disabilities require their own form of assessment for parental capacity. Key issues that must be addressed include:

• Does the parent have the ability to see the child for who he/she is?
• Does the parent also recognize that the child has needs that will change with age?
• Can the parent identify current needs and respond?
• If there are limits to the above, what supports are in place or could be put in place that would help with the deficits?  In this case, the parents of the mother made home and support available? 
• How, in fact, does the parent manage day to day requirements for self and the child?

There are, no doubt, other questions. There is a need for an environmental scan that will put the mother and child into a context where supports can be seen. Gaps would also be seen that could then be explored for supports.

This mother's mild intellectual disability is also part of the discussion. Disability exists on a continuum from quite mild to quite severe. Disability is not a one size fits all issue. Intellectual disabilities are getting better attention when child protection issues are considered. One disability that needs better attention is Fetal Alcohol Spectrum Disorder. Despite the word spectrum, it is often thought of as one disorder that comes in one form - disastrous. But it too has a spectrum.

Too much of the FASD and other disability literature has been written about the more profound forms of disorders. Let us begin to assess each parent for what they might be able to do and how that can work well enough for the child with the right supports in place.

Certainly not every parent is going to be able to do it - but many can and should be allowed.

To borrow a social work concept, let's consider the parent ecologically - individual strengths, immediate supports, external supports (such as parent coaching) and systemic supports such as health nurses and financial supports. Very few of us manage on our own.

The other aspect of the Massachusetts case is the role of kinship care. This has become almost a mantra in child protection to find kinship supports. So let's start there when working with persons with disability. Many have been using kinship, other informal and formal supports for most of their lives. Why would we not allow that as part of entering parenting as opposed to thinking that such a parent is going to go it alone.

Failure to criminalize a drinking pregnant mother

In a vital case in the United Kingdom, the Court of Appeal has ruled in the case of CP that a mother cannot be held criminally liable for causing FASD in her child. There are certainly many who might wish to see this happen. Indeed, it is happening in several American states. The UK decision is important as it recognizes that several key issues. In reading the decision, I am reminded of main points of debate:

• Is a foetus a child? - In Canada, this has been rejected by the Supreme Court of Canada. If the argument is accepted, then there is a wide range of behaviours that would fall under the rubric of causing harm to a child in utero - think of smoking, an unhealthy diet, obesity, taking of certain prescription medicines and so on. 
• Should a mother be criminally responsible for behaviour she could reasonably know would harm the child? This raises more than alcohol and brings back the discussion on a wide range of behaviours. But, while it stays that a mother who is drinking heavily should be expected to know that she will harm her child, it would not be hard to extend this argument against women whose various medical conditions make a pregnancy high risk. Should that mother also be held criminally responsible because she chose to take a risk that had a high probable outcome of harm?
• If the foetus is not a child within the meaning of law, then harm done in the pregnancy cannot be a criminal act. On this point, the UK Court of Appeal notes:

1. The reality is that the harm has been done to the child whilst it is in utero. The fact that if the child is born alive it will suffer the consequences of the insult to it whilst in the womb does not mean that after birth it has sustained damage by reason of the administration of the noxious substance. One only has to cast one's mind back to the Thalidomide tragedy. The injury was done to the affected children by the administration of the drug whilst they were still in the womb. Those children who were born affected were born with missing or ill-developed limbs. Whilst they suffered the consequences on a lifetime basis after birth, they did not sustain any additional damage after birth by virtue of administration of the drug.


2. Reference to the expert evidence of Dr Kathryn Ward, an experienced consultant paediatrician, whose very detailed report was before the First Tier Tribunal, (and which was not disputed), shows that the harm which is done by ingestion of excessive alcohol in pregnancy is done whilst the child is in the womb. The child would then, when born, show damage demonstrated by growth deficiency, physical anomalies and dysfunction of the central nervous system. Very often, as in this case, the full extent of retardation and damage will not become evident until the child reaches milestones in its development, at which point matters can be assessed. The fact that such deficits cannot be identified until that stage does not constitute fresh damage. It merely means that the damage was already done but has only then become apparent.


3. It seems to me that this is fatal to the appellant's contention. The time at which harm, acknowledged in this case to amount to grievous bodily harm, occurred was whilst CP was in the womb. At that stage the child did not have legal personality so as to constitute "any other person" within the meaning of s23. The basis upon which the actus reus is extended in a manslaughter case cannot apply here since nothing equivalent to death occurred to CP after her birth.

Those who argue the right to life will find this decision very disappointing. They would suggest that the foetus is a life from the moment of conception. However, to sustain this legally requires that we are, as a society, prepared to hold mothers to a very high standard of behaviour in pregnancy that must go well beyond alcohol to all behaviours that have a high probability of causing harm.

But there is another side to this. If we accept that argument then we must also hold that society has a very high obligation to protect the foetus that would include offering intensive medical help to all at risk women and pregnancies. Thus, an alcoholic or drug addicted women would be entitled to the care of the state in order to protect the foetus. 

This then takes us down the road of forcing treatment on mothers who's e behaviours may place a foetus at risk. Those who may jump on that bandwagon will most likely think of women with alcohol and drug problems. They may find the moral ground of forcing treatment on these women as a group easy due to the nature of their disease (addiction) and a belief that it is a moral versus medical issue. But what then are we to do with the poorly managed diabetic, the heavy smoker, the mother who has been advised against pregnancy due to medical risks - are we to force treatment on them?

What then are we to do with one of the higher risks for children - families who live in poverty where access to a healthy diet and good pregnancy care are very challenging? Is society willing to now say that they should have forced supports? There are many more children born to women with various forms of higher risk pregnancies arising from medical and social conditions other than alcohol.

As for drug use in pregnancy, we can fall very short in understanding the long term implications. A study by Dr. H. Hurt in Philadelphia found that the "crack baby" epidemic of 25 years ago has not materialized in the way it was predicted. Many of these children are doing well. Poverty may have been a bigger issue.

All of this is not to say that we should fail to help mothers be the best they can at being pregnant. We should - but that is not accomplished through criminalizing or jailing mothers - that is the ultimate in mother shaming. It is be education, community supports, health care and harm reduction. 

Alcohol and Pregnancy

Anyone who works in child protection knows that Fetal Alcohol Spectrum Disorder is a prevalent and devastating disorder that brings life long implications. The effects can range from profound to minor. Much depends upon what was consumed in what quantity during which periods of the pregnancy.

There are many things that can be toxic to a foetus which can include alcohol, tobacco and other drugs.

A recently published longitudinal study has suggested that minor amount of alcohol are not harmful to the foetus or the child as she develops. A study of more than 10,000 children followed to age 7 found that there were no indications of increased odds for mental or cognitive deficits. Light drinking was defined as 1-2 drinks per week.

What the study did not do is identify what level of alcohol consumption was safe and that which was not safe. That, of course, is a defining issue.

The challenge with this study is that, while it truly helps to advance the debate, it can easily be misinterpreted. It can be seen as a license to drink in pregnancy. While this is an impressive study, it still leaves many question unanswered.

The advice still should be to not drink in pregnancy but to also not encourage panic when a mother announces that she had a drink at a party. In addition, we should likely be paying a lot of attention to the issue of smoking in pregnancy as well.

Drug testing parents

There is little doubt that parents who are thought to abuse drugs or alcohol (or are addicted) constitute one of the most prominent groups in child welfare populations. Efforts are often made to help the parents address their usage either through therapy or more formal residential treatment programs. Yet, relapse is common when people are working their way into and on through the recovery process.

Child protection seeks to have some assurance that recovery has enough stability that it would be safe for children to be in the care of the parents. The costs of substance use can be staggering. Consider, for example, that in Alberta, it is estimated that there are 36,000 people with Fetal Alcohol Spectrum Disorder and 450 babies born annually who will be affected.

The impact of substance abuse can also be seen in neglect and maltreatment of the children as the substances gain a greater hold on the life of the parent. Not all parents become addicted and not all parents who use are neglectful. One needs to think of the "functional" alcoholic. Family life may not be stellar in such a case, but child protection is often not involved.

How then is a child protection worker to get some assurance that the parent is sober. Some might argue that the worker should take the parent's word for it in the absence of any overt indication to the contrary. To do otherwise, some might see as oppression.

Anyone who works with people in recovery know that many who relapse seek to hide it. They will lie, avoid, manipulate in order to do so. Given that, in relapse, the DAMN behaviours come to the fore, why would the parent not (DAMN = deny, avoid, minimize, numb).

The rights of the child to safety trump the rights of the parent to use. particularly if their use has placed the child at risk.

Child protection has a duty of care that can be partially satisfied by drug testing. Yet that too is no panacea. Hair follicle testing tends to be more reliable than urine testing, although the latte is cheaper and faster. Urine testing is more open to manipulation.

Either way, the testing needs to be done by accredited labs.

If testing is going to be done, it should be done on a short notice, random basis to limit the opportunities for "cheating".

Drug testing needs to be used when it fits into an overall plan of case management. It also should not be done unless there is a clear connection to the child protection issues. It should never be done as a "fishing expedition" to see what might be found.

Neonatal Abstinence Syndrome

Research published today in the medical journal JAMA is frankly alarming.

The rate of newborns diagnosed with neonatal abstinence syndrome (NAS) in the U.S. nearly tripled over the last decade, according to a JAMA study.

Using national databases, researchers examined trends in maternal opiate use and NAS diagnoses from 2000 to 2009. Among the findings:

• NAS diagnoses rose from 1.20 per 1000 hospital births in 2000 to 3.39 per 1000 in 2009.
• At the same time, maternal opiate use increased almost fivefold, from 1.19 to 5.63.
• Hospital length of stay for NAS remained relatively steady, averaging 16 days.
• Total hospital charges for NAS rose nearly fourfold, from $190 million to $720 million.

The researchers estimated that in 2009, roughly one infant was born every hour with symptoms of drug withdrawal.

This research along with others that have been appearing on the dramatic rise of opiates, particularly those such as Oxycodone, Oxycontin and others should be causing society to be up in arms against big pharama. But it is also a wake up call that we must be looking at why addiction continues to be such a major force in our society. Prevention is going to come when we truly seek to consider:

* why families are so emotionally fractured;
* children are born into families that are so busy that true emotional presence is missing;
* sexual and physical abuse and maltreatment remain all to frequent occurrences; and
* we are societies where dominance, control and greed have taken such power over love, care, acceptance and nurturance.

Sure, there are genetic predispositions for addiction, but it is environment (e.g. family, community and society) where things like addiction emerge or not.

The cost to society of children born with NAS and FASD is enormous.