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Karen Czapanskiy

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"Chalimony": A New Solution for Special Needs Children

Posted: 12/01/10 04:05 PM ET

Raising any child requires devotion, flexibility and sacrifice. When the child you're raising has a serious disability or chronic illness, add exceptional levels of anxiety, chaos and unpredictability. These extraordinary care requirements mean that many parents cannot combine caring for their child with meeting the demands of a job. Parents of a child with autism, on average, have lifetime earnings of nearly a million dollars less than other parents. If the parents are married or living together, they earn less than other parents, but they share their economic resources. Stress undermines many of these relationships, however. The rate of divorce for parents of young children with ADHD, for example, is almost twice as high as for other parents of young children.

Today, divorce law largely ignores the economic problems faced by the divorced parent of a special needs child. We need a new post-divorce remedy, which I am calling "chalimony." It would be available to the parent with whom the disabled or chronically ill child lives most of the time if that caregiver is unable to be employed full-time because of the child's special needs. The child's other parent could avoid paying chalimony if he or she were meeting enough of the child's needs to permit the primary parent to work full-time.

Child support under current law does not do what chalimony would. It is designed as a substitute for the money that would have been spent on the child by typical parents making average expenditures in a shared household. The formulas used throughout the country fail to take into account the unusual employment challenges faced by parents raising a special needs child. Alimony is also not an adequate substitute because it is based on the needs of the parent, not on the predictable financial losses the parent experiences because of the child's unusual care needs.

Chalimony will make life better for a special needs child. The greater economic security enjoyed by the child's caregiving parent may afford him or her the time and energy to look beyond the child's immediate medical and therapeutic needs. With a few hours a week of leisure time away from work, the parent would have time and energy for play, community activities and even recreational opportunities.

Paying parents, mostly fathers, will complain that chalimony is unfair, since they're already paying child support and a few are already paying alimony. The complaint is unjustified. The child's caretaking parent is making a far greater financial sacrifice, and it will last throughout that parent's working life. Also, any alternative to parental care will cost the paying parent much more -- imagine the cost of putting a child into an institution, for example, or paying for round-the-clock care by appropriate specialists in one's home.

Caregiving parents, usually mothers, do have a legitimate complaint: chalimony could reinforce the gendered parenting norms that led them to accept the primary parenting role in the first place and led fathers to make employment their higher priority. As proposed, however, chalimony provides a new financial incentive for parents to change their gendered parenting practices, since any parent who is doing enough care to allow the other to be employed isn't obligated to pay.

The law's silence on issues affecting families with disabled and chronically ill children goes far beyond the economic issues affecting divorced parents. Divorcing parents and family courts have little guidance on custody and visitation problems for special needs children, for example. Nor has there been much thought given to whether these cases are better solved through negotiation or through litigation. Employment law, unemployment benefits law and public benefits law also do little to address the needs of families with special needs children. Chalimony, therefore, is only the beginning of a much longer series of conversations.

Chalimony is discussed at greater length in my recent article, Chalimony: Seeking Equity Between Parents Of Children With Disabilities And Chronic Illnesses, which appeared in the New York University Review of Law and Social Change this year.

Cross-posted from New Deal 2.0.

 
 
 
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HUFFPOST SUPER USER
rybalaw
06:56 PM on 12/05/2010
Texas already requires lifetime child support for disabled children. The disability has to exist prior to the child's 18th birthday
04:14 PM on 12/04/2010
We are a not for profit foundation in Midlothian Il that cares for children with special needs and children that are not, our after school program Is the true solution for children with special need. Integrating them into play with other children is happiness expressed on the faces of both special need children and other children. Some of our clients have been turned down by over 20 other programs because the child care fees are not covered by the state and if covered, the co-fee is enormous leaving the parent with no other choice but to leave the child with any one that’s willing to keep them while their at work. A nurse for one of our participants told me last Wednesday on the phone while we where discussing his health, since he has interred you after school program he is not the same child * he looks happy he feels happy when he was all over the place he was tired and sad* you see changes start with individuals that feel that they have responsibilities to care for the helpless and act on them, we can all feel sorry for others, however doing something about it is what counts. thank you for this article it is a step up to a better and brighter life for the moms and the children
04:59 PM on 12/03/2010
What is so sad in this day and age, is that either party to a divorce is assumed by "the system" to be planning to abandon their responsibilities. We need to move to the "trust but verify" model that expects both parents to hold up their end, and then confirms that they are in fact doing that, if doubt is raised. You will find, I predict, that offering several models of workable arrangements to newly separated parents, in a fair and unbiased setting, will result in the parents selecting the option that is most beneficial to the children. Trained counselors can be provided to help guide the parents away from the poison behavior, and explain why its in their own best interests, in the long term, to pick something that works. But we have to be honest with ourselves. It's nice to imagine, as the author does, that the father can pay enough to cover child support, alimony, and chalimony. Or that somehow he can provide enough care to allow mom to work full time.

Take a moment to envision the life of a family earning the median salary of a one earner household. Then budget the time or the money to have one parent cover this new requirement.

In divorce, all parties must expect to reduce their standard of living, and increase the time they spend on their kids. And it needs to be a fair split for all involved.
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Mr Bobo
Punk Rock Libertarian. Different. Better.
05:04 PM on 12/02/2010
I'm the parent of two special needs children and heaven forbid my wife and I ever divorced, but with all of the annual medical expenses, health insurance and extra $$ we pay for a private school with small classrooms, I couldn't imagine squeezing one extra dime after child support and alimony. At that point, I'd have to move to the living room sofa.

How would the math even break down for "chalimony" in addition to child support and alimony?
01:11 PM on 12/02/2010
This appears to be a good idea, but it is flawed on many levels...
1) Do we really want to force parents to be financially responsible for their Adult Children forever??:or for that matter adult children to be responsible for their aging parents?
2) This type of post majority support will cause serious problems for SSI/ Medicaid/LT supports and vocational supports for the adult with a disability.Very few can do it alone; need to be a private/public partnership;
3) The best way to support these families this is to ELIMINATE the institutional bias in Medicaid and assure a FAIR wage for the staff (even if god forbid they are family members) that provide this important and life altering service;
4) Put your money where you mouth is: PASS THE COMMUNITY CHOICE ACT NOW; with no asset or income limit for those with significant and lifelong challenges.Either we value LIFE; ALL LIFE OR WE DO'NT. Actions speak louder than meaningless political gestures.
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Paul Hoogeveen
04:04 PM on 12/02/2010
Very well said and fanned.
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HUFFPOST SUPER USER
LaurieAnn
Charity is NOT a substitute for justice.
06:29 PM on 12/02/2010
Excellent points all.  I am the parent of a special needs child and I worry every day about what will happen to my child when he becomes and adult, especially after my husband and I are deceased.  This country needs a much better social safety net to provide a safe, secure basic living situation for special needs adults.  

I actually have had people tell me that I shouldn't have had a child unless I was prepared to bear ALL the costs of any eventuality.  My answer is that of course I will as long as I live, even as that means my husband and I will live in near penury once he is retired---but it's pretty darned difficult to save up enough money to support a child for his/her entire life after you are dead.
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Paul Hoogeveen
12:38 AM on 12/03/2010
It has been my experience that the people who say things like that don't have to worry about caring for a disabled or special needs child.
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HUFFPOST BLOGGER
Jane Devin
Culture Critic, Essayist, Author
01:05 PM on 12/02/2010
There's a limit to how much one parent can pay and still sustain a life for themselves. The last time I checked, the URESA guidelines for child support were 20% of gross pay. I doubt that increasing this to 25 or 30% would allow another parent to quit working unless the pay in question is in the upper brackets. Finally, if the URESA guidelines were raised for the working poor and middle class, we may be in danger of creating a whole new pool of people who can't get by on their (now reduced) paychecks.
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Paul Hoogeveen
04:10 PM on 12/02/2010
This is of course supposed to provide an incentive for paying parents to participate more in terms of caregiving, which in turn (theoretically) should allow the custodial parent to work part-time. Great in theory. Anecdotally speaking, however, unless both parents are fully willing to commit to this arrangment, it isn't all that workable. (Been there, tried that of my own volition, and am now both the sole breadwinner AND caregiver.)
12:56 PM on 12/02/2010
In these depressing times for most of us financially, it was interesting to read your article. No one understands the financial and social implications of having a child with a disability until they have one. Their are unexpected joys, and unpredictable sorrows, but one thing is certain, you are left reeling in a foreign country with a new language to learn, and a completely different life than you ever expected. Not worse, just different. I wish our world was in good enough shape for this type of issue to have any hope of getting dealt with, but when we can't even get our politicians to support what used to be the middle class? Forget it. Thanks for your work though. It's incredible that you're trying to raise awareness of this.
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HUFFPOST SUPER USER
LaurieAnn
Charity is NOT a substitute for justice.
06:38 PM on 12/02/2010
I agree with you Janet that there is precious little public discussion about the quality of life of special needs families and the concerns we face; especially as our children "age out" of systems or are considered "too high functioning" to require services yet are unable to find jobs to support themselves.  

Nor are the helping professions well equipped to deal with the emotional issues our families face as we see our friends and extended families drift away, our children face rejection from peers and just the strains of keeping like together while caring for someone requiring the constant vigilance of a young child.
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HUFFPOST SUPER USER
gwhizz
12:55 PM on 12/02/2010
This is a wonderful idea. I have had to turn down more lucrative job offers so I can be close to home and close to my child's school. I've had to pack up and run to handle various problems multiple times, fortunately I have an understanding employer and personal leave available. When my child got in trouble with the law and was placed in a program, I had to take days off work to ferry around to hearings, check ins, required classes and therapist visits (over and above the usual weekly sessions). People have no idea how difficult caring for a child like this can be, and add to that traditional child support ends when that child turns 18, even if there is no chance in h*l# that that child will be able to leave home, or hold a job of any kind! Child support from a noncustodial parent is not sufficient in cases like these--especially when you consider that in many cases, the non-custodial parent LEFT THE HOUSEHOLD as a result of the condition and resulting behaviour leaving the custodial parent to manage on their own.
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MarcEdward
likes all cats more than most people
12:54 PM on 12/02/2010
Great article, other than it embraces the current "norm" of two working parents, which I think is detrimental to kids, special needs or not. Women's Liberation, instead of allowing two earners to do better, has simply made it necessary for most families to have two working parents to sustain the same standard of living that one income provided a few generations ago. If our economy was structured so that one income earner could provide for a family than it wouldn't be left for the primary caregiver to "help the child in her off hours".
The FIRST priority should be the children, not the part time job.
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Lisa Spurgeon Bullock
10:03 AM on 12/03/2010
Love, love, love you post. Oh, did I mention that I love your post, lol. I could not agree with you any more. I am very happy that all of us women are able to do whatever we wish and can hold any job a man can. But, the downside is definitely that we now must have 2 incomes in order to make it comfortably. The ones that lose in this case are the children. That is why so far my husband and I have not had any children but are extremely active participants in our nephews lives, who are being raised by single mothers.
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BetteB
12:43 PM on 12/02/2010
This is a good solution since it can be overcome by being actively involved in the child's daily life, but only when the noncustodial parent is psychologically adult enough to handle the special needs of their child. I've been a single mom of twins, one of each, since they were three with my son being diagnosed with autism at 3.5 back in 1993. Their father just stayed an active addict so had never been a part, he's still at it as a matter of fact. It's a shame, but it is what it is. I stay home with my son who is now 22, I always have first on AFDC, and then as his In Home Support Service person. He needs 24/7 care for protective services, especially now that he started having seizures. We are fully dependent on the services California provides us, although I am "this close" to having my MS degree which I HOPE I can find a job teaching online with quickly. There is NO WAY I can do an out of the house job unless it was our own business. My kids do not have the "normal" two family (step) backup system, they have me. I LOVE my job, so there is that. :)

Thank you for thinking of our children Karen.
12:43 PM on 12/02/2010
Very good article. The reason why the laws generally ignored the needs of single parents, especially of mothers and their children, is because most of the laws were and are still made by men with little understanding of and attention to these vital problems. However, I don't want to only blame men, women are also responsible for their inactivity, for their own lack of understanding, solidarity for and support of their fellow women. For example, single mothers not only sacrifice their careers, they are also disadvantaged when looking for regular jobs and at the workplace. Many times women are rejected by women employers when applying for jobs and asking for flexible working time to accommodate their family needs and responsibilities. Women are still massively discriminated against and underprivileged, in spite of all progressive women' political and civic activities and studies beginning during the civil rights movements of the 60s.
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Paul Hoogeveen
04:02 PM on 12/02/2010
See my comment below. Single fathers with children face more or less the same problems. Moreover, as the societal norm is to dismiss the idea of fathers as caregivers, the many disparate family justice systems in the US are basied against fathers playing the caregiver role--even when they fight to be because of abuse and neglect in the mother's home.
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Paul Hoogeveen
12:31 PM on 12/02/2010
I am divorced father who has taken physical custody of all three of my sons, one of whom is an 18-year-old who suffers from Duchenne’s muscular dystrophy, while the other two suffer from mood disorders. (My oldest is now living on his own.) I agree in theory with Ms. Chapanskiy’s stand on the issue of additional support for their disabled children (whether in terms of money or caregiving). However, as a caregiving father who has had to navigate a family justice system that seems to be heavily biased against viewing fathers as caregivers, I would add that while balanced caregiving versus additional financial support sounds nice, in my own experience caregiving fathers also face both societal and courtroom bias regarding “traditional” gender norms. My sons’ mother, for example, has paid nominal child support for fewer than six months over the four years that I have had custody of my children. (This after fighting for years just to get custody because of issues of neglect in her home, and despite my providing additional care AND paying support well above what was ordered by the court.) Because she has a ten-year-old daughter from another relationship, she claims she cannot work anything beyond school hours and has been employed for less than one year in total out of the past ten. The court has ordered no support from her whatsoever.
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Mr Bobo
Punk Rock Libertarian. Different. Better.
04:52 PM on 12/02/2010
Men truly get the shaft in the family justice system. I have several male friends who also are primary caregivers. It's interesting how one seldom, if ever, hears the term "deadbeat mother".
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Lisa Spurgeon Bullock
10:07 AM on 12/03/2010
And I am starting to see more and more "deadbeat mothers" out there. I am often amazed at how many of my male college peers are single fathers who have sole custody.
11:44 AM on 12/02/2010
Very interesting article -- what intrigues me the most and substantiates my own experiences, outside of divorce, is the fact that we caregivers of special needs children often give up or bypass careers, jobs, etc. to care for our children. It speaks as well to the dire need of respite for families of children with special healthcare needs.
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BetteB
12:46 PM on 12/02/2010
I'm 51, single-mother of 22 year-old twins one with autism, and just starting out on my (still future, but closer that ever) career as a teacher of community college (or lower) level online, and at home so I can do both. It can happen, it just takes more time.
Love
Bette
This user has chosen to opt out of the Badges program
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12:49 PM on 12/02/2010
My special needs kids would have been MUCH better off with me than with their BPD mother- she can keep her money for all I care - but try telling THAT to a court.   
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Mr Bobo
Punk Rock Libertarian. Different. Better.
04:55 PM on 12/02/2010
I think most family court judges just phone it in and go with stock decisions without too much thought.
AddieFaye
citizen looking for intelligence
11:10 AM on 12/02/2010
The rules in my state are that if the disabled child collects ANY child support (considered "income" for the disabled child) from the divorced spouse, they are NOT eligible for medicaid or SSI...therefore, since she's uninsureable (can't afford the thousands insurance co wants to cover her now) I collect "alimony" through a "consent judgment" in order to keep my child medically covered and work part time out of my home & caretake my daughter who was brain injured at age 16 (she's now 26). This means I pay one months "alimony" in taxes on "unearned" income. Also cannot claim extra child exemption since she's over 21 now. And usna73 is correct in cutting out the middlemen...want to get serious about waste? stop "renting" medical machines, wheelchairs, etc., at exorbitant monthly rates when you can purchase them outright for less (oh, and when you no longer need them, the business tell you to throw them away!!)...and pca agencies are the worst; they pay minimum wage to professional caretakers and then expect me to fax all the hours to medicaid while they collect their $3 - 5 per hour. I'm all for free markets but it IS immoral to make money on the backs of the disabled and sick...these medical middlemen and for profit healthcare providers are the biggest sources of waste....why don't states hire the disabled who can work to manufactur and distribute medical equipment directly? That's a win/win....
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BetteB
12:56 PM on 12/02/2010
Oh yes, you reminded me. I owe the IRS money because I foolishly thought I could still use my son, 22 now, who has autism as a child credit exemption. The SSI/SSD thing is criminal it seems, or should be. I dodged that bullet by avoiding the marriage game.
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usna73
We are all in this together
01:38 PM on 12/02/2010
Addie, depending on your state, when the disabled person reaches majority, 18, if on Medicaid, the guardian ( often the parent) can work for the agency. We are also examining legal routes so the provider can work independently ( or we'll form an S-Corp) to cut out the middleman.

My best to you and your daughter.
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Paul Hoogeveen
04:17 PM on 12/02/2010
Do you have a resource on this tp point us to? My 100% disabled son is 18 and on Medicaid and I consequently have little hope of being able to work full time in the near future.
10:58 AM on 12/02/2010
As a special education attorney, we face this all the time. I believe the unofficial statistic is an 80% divorce rate with Autistic Spectrum Disorders alone. I put my own career on hold, to my detriment now that I too am getting divorced, for high maintenance children. There has to be consitency across environments for children with any type of disability, and often custody and visitation offers would be highly counter-productive to the meaningful and significant educational progress to which the student is entitled. This was a very thoughtful approach to a most complex situation.
12:42 PM on 12/02/2010
While the 80% divorce-rate figure has been batted around a lot, there has been a recent study with a huge nationally-representative sample showing a very different picture:
http://www.kennedykrieger.org/kki_news.jsp?pid=8851

According to the news release linked above, "Dr. Freedman and his research team found that 64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD."

This is not to minimize the issues around divorce when there are special needs involved -- just to say that the divorce rate is not as high as many suppose.
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BetteB
12:58 PM on 12/02/2010
As a special education attorney could you please create a pro bono guardianship set-up for parents who have always had their children to avoid all the cost and invasion the current model has, please? You could name it The Laracuente Guardianship. :)
Please?
Thank you.
Love
Bette