By Sherri Donovan
Reprinted with author’s permission
While every divorce is extremely difficult, with or without children, divorce for parents with a special needs child can be even more so. Advances in treatment of newborns with low birth weight and other serious medical conditions have dramatically increased the number of families that include a special needs child. In the year 2000, nearly 3 million American families had at least one child with a disability or chronic illness. “Special needs” can include life threatening illnesses (such as severe asthma, food allergies and Type I diabetes), chronic and/or physical disabilities (such as cognitive or language delays, learning disabilities, ADHD and pervasive developmental spectrum disorders such as autism and Asperger’s Syndrome), and mental and/or behavioral disabilities (such as anxiety, conduct or depressive disorders, and difficult temperament or emotional disturbance).
Parents of a special needs child know that caring for their child involves an often overwhelming and demanding lifelong commitment that also introduces an added strain to the parents’ own relationship. The rate of divorce for couples with a special needs child is over 90%. Divorced (or never-married co-parents) of a special needs child may face additional and substantial challenges throughout the divorce or separation process and after, especially when their child requires lifelong care and support. Parents must face the reality of a future that may be very different from the one they had imagined for themselves and their child.
Divorce negotiations and agreements typically address child custody, visitation and support, as well as spousal maintenance and property division issues. The resolution of these matters is inevitably more complex when special needs children are involved. The uncertainty about the nature and cost of the child’s future expenses and needs make it all the more challenging to arrive at a consensus and draft a divorce agreement and/or parenting plan that will serve the parties well into the future.
Custody and Access Issues:
In determining custody and access issues, the particular needs of the child will need to be addressed and these may be difficult to determine with a special needs child. To further complicate matters, parents of special needs children often suffer through the classic stages of grief (i.e., denial, anger, guilt, bargaining, depression and acceptance) and as a result, they often differ with respect to their own perceptions of their child’s diagnosis and needs and thus in their own capacities for parenting.
Parents may become obsessively focused and controlling with respect to the child, or remain in complete denial about their child’s diagnosis. Making decisions about educational, health and treatment options is already complex as no one clear path is likely to emerge at each stage of development. Decision-making becomes even harder when parents stubbornly maintain conflicting views of their child’s needs. Further, special needs children may need consistent home environments, care and treatment, routines, transitions and parenting styles in order to thrive. Parents who are unable to cooperate may inadvertently undermine their child’s care.
A court may need to step in and appoint a neutral evaluator as well as an attorney for the child. Reports submitted to the court after consultations with those professionals involved in the child’s care will be invaluable when a court and attorneys seek to help parties arrive at an agreement that serves the child’s best interests.
Even post-divorce, ongoing joint decision-making regarding a special needs child’s health care and education requires frequent and in-depth communication between co-parents. Simply determining whether or not a child needs special education involves parental input and consultation with various professionals. If it is determined that a child is eligible for special education services within a public school system, parents are often expected to regularly participate in meetings to review and assess their child’s particular educational program. Selecting and working with medical, therapeutic, benefits and education professionals can be a time consuming, ongoing task without any clear choices.
Adapting access schedules to best serve the child’s needs over time may also require a greater amount of cooperation and flexibility between parents. Parents of a special needs child often need to become skilled at specialized caretaking and treatment. It may be more difficult for a child with special needs to go back and forth between two homes in a joint custody situation due to difficulty with transitions, inability to travel far, or due to the need for a set routine and schedule. Parents of a physically disabled child may also need to ensure that both homes are equipped to meet their child’s needs.
Parents must take care to assess the particular needs of their child when constructing their parenting plans, thoroughly tailor their plans to accommodate these needs, and be willing and able to adapt their plans accordingly over time as their child develops. Parenting plans should be detailed and spell out essential information and instructions to ensure that both parents agree as to the methods of managing the child’s behaviors, treatments, diet, environmental needs or preferences. How the child will travel between homes must also be addressed in greater detail, along with issues such as whether the child will need to travel with special medical or physical equipment.
Therapy or parenting classes may be helpful to parents of a special needs child, as may be the ongoing utilization of a neutral such as a parenting coordinator. A neutral familiar with the parenting agreement, the family dynamics and needs, and the other professionals involved can reduce the potential for conflict between parents and resolve conflict more efficiently when it does arise. A parenting coordinator can be kept on standby to help with decision-making and communication, to help manage developments and agreements, and to serve as a “hub” for the various professionals involved in the child’s life.
Divorce can be a time of stress, crisis and conflict. It is important for all parents to keep the best interests of their children at the forefront during this process. It is even more critical for parents of special needs children to emerge from their divorce with the ability to communicate in a healthy and cooperative manner so as to prepare them for a potentially lifelong co-parenting relationship.
A child with special needs will require an extraordinary amount of financial support, the amount of which may not be predictable at the time of divorce. In addition, while many children leave home at 18, a child with a disability or chronic illness may not follow this life course. Government benefits and legal child support obligations may terminate at this crucial age, and the custodial parent’s need for funds to support their adult child may continue.
When determining child support for the benefit of a special needs child, a court will likely need to deviate from standardized calculations and consider anticipated costs for medical care, prescriptions, therapy, special education, tutoring, medical and other equipment, adapted furniture, other treatments and supplemental needs.
The public benefits available to the child, both before and after the child reaches the age of majority, must also be examined. Four relevant government benefits programs exist, including means-based Supplemental Security Income (SSI) and Medicaid, and non-means-based Social Security Disability Insurance (SSDI) and Medicare. It is possible for a special needs child to receive all four benefits at the same time.
SSI allows eligibility for food stamps, while Medicaid pays for medical and mental health services, as well as drug therapy and home and institutional services. Medicare is a form of sponsored health insurance available for the elderly and disabled, and SSDI is available to individuals and minors or special needs children of an individual who has died, retired or become disabled. A special needs child who is under age 22 and who is not working can obtain SSDI benefits based on his or her parents’ prior earnings.
With means-based aid, SSI and Medicaid, eligibility is based on financial need and, in the context of a divorce, it is critical to understand how in-kind versus cash support affects a child’s eligibility. For children under the age of 18, income and assets held in the parent’s name are relevant to determining whether a child is eligible to receive means-based benefits. Child support paid in cash to a custodial parent will reduce a child’s SSI amount by one-third. SSI will not count the value of spousal maintenance received if it is received in the form of goods and services, rather than in cash. However, if these in-kind payments include basic shelter expenses such as rent, mortgage, taxes or utilities, this results in a one-third loss of SSI benefits. In-kind payments for goods and services such as after-school child care, therapy, tuition, car expenses, internet, etc. are not considered income by SSI and would not reduce the benefit, or disqualify the child.
Special educational supports and services may be mandated by federal or state law and provided to a family at no cost. Through the age of 21, federal educational initiatives ensure that disabled children receive education and services that will help them become independent and contributing members to society. If a school system does not pay for all costs in connection with special education, parents must address how such out of pocket educational expenses will be paid for in the divorce agreement or parenting plan. Tuition, evaluations, tutoring, consultation fees and other expenses must be contemplated.
The need for vocational, social, and adult living skills training, as well the potential need for custodial care or guardianship, should also be discussed by divorcing parents in anticipation of the child’s needs as he or she transitions from school age into adulthood.
Once a child is over the age of 18, assets held in the parents’ name no longer affect the child’s eligibility for means-based benefits. Cash maintenance paid to a custodial parent will no longer be considered income for SSI purposes. Cash child support will result in a dollar for dollar loss of SSI however, and it may also risk disqualifying the adult child from Medicaid at 18, and from Medicare at 20. Entitlements to the supports and services provided at no cost through the educational system terminate as the child ages out of the system, between the ages of 18 and 21. Assets held by the adult child in excess of $2,000 will disqualify him or her from SSI.
Parents may wish to set up a trust for the child during the divorce process or in their estate plans. A divorce financial planner can help project the cost of the child’s future needs and provide advice as to how to fund and manage the trust so that the child’s eligibility for public benefits is not impaired. Special needs trusts enable disabled persons to have an unlimited amount of assets set aside for their needs without disqualifying them from government benefits. Retirement plans, life insurance or other financial accounts, as well as lifetime gifts can be directed to a special needs trust. Assets that flow directly to a disabled individual, e.g., if a parent dies intestate, could put this person’s eligibility for government benefits at risk. New legislation could potentially direct that such intestate funds flow instead to a pre-existing special needs trust, or if none, to a qualified pooled income trust that would manage and disburse funds so as not to supplant government benefits.
If one parent carries the bulk of the caretaking burden, this parent’s diminished capacity for earning income and contributing to retirement and investment accounts should also be considered when determining spousal support and property division issues. How does a custodial parent obtain support from the other parent to help with the expenses of a special needs child who is beyond the state cutoff age for child support? As stated above, often parents of special needs children do not agree on the severity of the child’s disability or the reality of the child’s need for support. Often one parent is less involved in the child’s life than the other parent, who ultimately shoulders both the caretaking and financial support obligations alone.
Many states in the U.S. have laws that obligate parents to provide financial support for their child only until the child reaches the age of 18 or 21 or until the child graduates from high school. Yet individuals with special needs often require financial support throughout their lives for expenses such as tutoring and private education, medical care and therapy, testing and assessments, vocational training, assisted living arrangements and supplemental income for basic living expenses when social security disability is not sufficient. 29 states have enacted legislation that requires parental support for special needs children to continue past the age of majority. Public policy rationales for extending the obligation of child support for the benefit of disabled adults have included (1) the natural obligation of parents to support their children, and (2) the protection of the public from having to support a person who has a parent able to do so.
The custodial parent may be able to get help via spousal support, taking into account the costs of support for the child. Spousal support may or may not have a set termination point determined by state legislation, yet is intended to provide for the needs of a former spouse only. Still, never-married parents cannot seek such support from each other through the court system.Further, while spousal maintenance may help, it is not always adequate to account for decreased earning capacity, the burden of the custodial parent’s extraordinary responsibilities, or the impossibility of this parent “catching up” should they be free to re-enter the workplace at a later time. An inter-parental remedy designed to replace some income lost by a parent whose caregiving responsibilities reduce or eliminate income earning capacity should be considered by state legislatures.
While the ultimate responsibility for addressing the issue of support for disabled individuals beyond the age of majority lies with the legislature, courts should recognize the increased expenses of custodial parents and diminished earnings capacity when making final determinations in connection with spousal maintenance and property division. However, many parents of special needs children will continue to negotiate or mediate their own solutions without legislative backing or judicial recourse.
Family lawyers must take into account the added complexities involved when their clients are co-parenting a special needs child. Each party’s (including the child’s) financial situation and future earnings capacity must be thoroughly and realistically considered at the time of divorce. Agreements must be detailed and tailored, with methods for dispute resolution and modifications outlined and set forth within, in order to effectively address the family’s uncertain and ever-developing needs and expenses. Above all, destructive and inflammatory adversarial practice must be kept to a minimum so as to foster these parents’ ability to cooperate and communicate post-divorce for their sake, and for their child’s.
 2010 New York University Review of Law & Social Change, 34 N.Y.U. Rev. L. & Soc. Change 253
 2005 Blackwell Publishing, Family Court Review, October 2005, 43 Fam. Ct. Rev. 607
 Parental Reaction to the Disabled Child: Implications for Family Courts, October 2005, 43 Fam. Ct. Rev. 596, Heidi Perryman
 Special Needs Children in Family Court Cases, October 2005, Fam. Ct. Rev. 566, Saposnek, Perryman, Berkow and Ellsworth
 Divorce and Special Needs Planning: Issues When a Party in a Divorce has a Disability or a Child with a Disability, Theresa M. Varnet, M.S.W., J.D., Fletcher Tilton
 Pooled Special Needs Trusts: An Exception that Should be the Rule to Protect Adults with Developmental Disabilities, 27 Law & Ineq. 441 (Summer 2009), Jack Sullivan
 ClearviewDivorce.com Blog, “Special Circumstances: Why Divorce with a Special Needs Child is More Challenging”, June 24, 2011
 States such as Maryland, Ohio and Rhode Island automatically terminate child support once a child reaches 18 or graduates from high school. New York and Mississippi extend child support to age 21, while Hawaii and Massachusetts extend support to age 23 if the child is enrolled in an accredited higher education institution.
 California Family Code Sec. 3910 states: “The father and mother have an equal responsibility to maintain, to the extent of their ability, a child of whatever age who is incapacitated from earning a living and without sufficient means.” Iowa Code Sec. 252A.3(3) states: “The parents are severally liable for the support of a dependent child eighteen years of age or older, whenever such child is unable to maintain the child’s self and is likely to become a public charge.” Virginia Code Sec. 16.1-278.15 states” The court may order the continuation of support for any child over the age of 18 who is severely and permanently, mentally or physically disabled, unable to live independently and support himself and resides in the home of the parent seeking.”
 Hendricks v. Sanks: One Small Step for the Continued Parental Support of Disabled Children Beyond the Age of Majority in North Carolina, 80 N.C.L. Rev. 2094 (September 2002), Jeffrey W. Childers
 Chalimony: Seeking Equity Between Parents of Children with Disabilities and Chronic Illnesses, Karen Czapanskiy, University of Maryland School of Law, 2010
Sherri Donovan ESQ