Government Benefits: The Safety Net for People with Special Needs
Public assistance benefits programs have become the financial and healthcare safety net for most of our country’s individuals with special needs. A troubling dilemma is created as healthcare costs continue to rise and as sweeping changes are proposed to curb the growth of the government programs that pay for them. This dilemma is further complicated by the fact that individuals with special needs (like the general population) are living longer (and often in the community).
Each family has its own facts and each public benefit program has its own rules, all of which may affect the drafting, funding, and administration of SNTs. SNTs can be utilized in a variety of situations. These include the situations in which parents plan for a disabled child, as discussed above; a disabled individual receives a windfall from a lottery, inheritance, or successful personal injury claim; or one spouse plans for a disabled spouse.
In general, SNTs fall into two main categories: third-party trusts that one individual creates and funds for the benefit of another (i.e., a parent plans for a disabled child, one spouse plans for a disabled spouse, a grandparent plans for a disabled grandchild, etc.), and self-settled trusts that beneficiaries create for themselves with their own money (e.g., from a personal injury settlement, a lottery prize, or an inheritance.) Obtaining advice from a skilled legal practitioner will help avoid unnecessary pitfalls with future eligibility for these programs and minimize potential crises for successor caregivers.
Special Needs Planning and Divorce
Another context wherein special planning considerations are made for disabled individuals is divorce. When the parents of a child with special needs decide to end their marriage, a variety of factors must be taken into consideration when agreeing on a divorce settlement involving a child with special needs. These are quite different from the concerns that other families confront in such situations.
Custody and decision-making authority become complex issues because the needs generally extend beyond the child’s eighteenth birthday (and often last for the duration of the child’s lifetime). Visitation also requires a heightened level of thoughtfulness. Children with special needs often have very structured schedules and require predictability within their environment. Frequent changes, even between two “homes,” can cause extraordinary distress. The child’s team (i.e., teachers, support staff, psychologists, medical providers, behaviorists) should be consulted, as appropriate, and engaged in the ultimate determinations so as to provide a consistent support system to the child across all aspects of life.
In addition to these concerns related to the child’s physical and emotional care, there are other atypical considerations when it comes to the child’s financial support. A final divorce order or agreement for parents with special needs children will often include details on both the custodial and noncustodial parent’s support obligation for child’s lifetime (as opposed to terminating at the age of majority). Unfortunately, the standard child-support guidelines do not generally cover the many added costs and expenses that come with raising a child with special needs. The permanent or long-term expenses of a child’s serious medical conditions and disabilities will require consideration. The likelihood and costs of a future residential placement (or a live-in caregiver) will need to be contemplated, along with whether there is any potential eligibility for public assistance benefits that might offset these costs. These types of large expenses require extensive planning.
An additional consideration includes post-majority support payments for a special needs child who is a recipient of public assistance benefits programs. After the age of majority, these support payments belong to the special needs child and, as a result, are counted as their personal income (and assets) for purposes of continued eligibility. These post-majority payments must be carefully coordinated with the income and asset rules of those programs to avoid inadvertently jeopardizing eligibility. Thought and planning should be given to whether the circumstances support a divorce decree directing the noncustodial parent’s child support payments to a self-settled special needs trust for the child’s benefit. (These payments cannot be directed to a third-party special needs trust because, as noted above, the payments belong to the child.)
Raising a child with special needs can test the very depths of personal tenacity and grit. And, when thinking and worrying for the future of that child, there can be no substitute for proactive and mindful planning led by the empathetic hand of a skillful special needs practitioner.
Practice Point: The Letter of Intent
Often a successor guardian/caregiver is a family member, but unless that caregiver has lived in the home with the child, even that person does not know the ins and outs of daily living to which the parents have grown accustomed. These family members do not know the names, phone numbers, email addresses, and locations of every service provider or practitioner. They may not be familiar with the exact diagnosis of the child or the nuances that come with that diagnosis. A letter of intent is a great way to communicate every detail to the future caregivers of a child with special needs.
The letter of intent is not a legally binding instrument, but, rather, it is an “instruction manual” of substantive and meaningful guidance addressed to future caregivers. Although there is no set format, the following topics are typically included.
- Family Information/History: Parents’ birthplaces, marriages, divorces, addresses; child’s siblings, extended family, and close family friends; pets.
- General Overview: Personality traits of the individual with special needs; explanation of the “why” of the document; parents’ dreams and goals, as well as those of child; the emotions and color of the child’s life.
- Medical History: Doctors and specialists with diagnoses, dates, and contact info; past surgeries; any routine procedures currently performed; where, who, and why.
- Dietary Needs: The individual’s “likes” and “dislikes,” allergies, sensitivities and intolerances, texture aversions, and other restrictions.
- Daily Schedule: Specific daily events from the moment of waking until the bedtime routine and sleeping; assistance with activities of daily living; independence in grooming and hygiene; if there are aversions to specific tasks, how these are handled.
- Education: Historical information relevant to the current education plan, including the recent IEP and contacts for advocates, school administrators, etc.; the individual’s desires for future educational needs.
- Benefits: Source and amount of any government benefit; redetermination periods.
- Employment: Details of past work history; current work; desires for future employment; the child’s expressed interests; a list of contacts or organizations connected with child or that may possibly be connected with transition into employment.
- Residential: Are the caregivers to stay in the home? How will the cost be covered? Does the child have an interest in living independently and the ability to live independently or in a group home? Location is important, as well, in relation to schools and social activities. What are the parents’ hopes for the child’s future? Any information related to current living status; the parents’ descriptions of what they want the future to be.
- Social and Religious: What activities does the child enjoy participating in or watching? Any physical limitations? Favorite place to go? Religious preference? Does music or singing affect child negatively or positively? Any contacts related to social and religious activities, as well as transportation options.
- Behavior Management: “Triggers” that affect the child negatively and positively? How is the child soothed in a negative/tense situation? What techniques/interventions work best? What makes him or her excited? What indicators should a caregiver look for to understand the mood of the child? Again, contact info for any specialists or therapists.
- Final Arrangements: Is there life insurance or funeral insurance in place for the child? Are there plans in place with funeral homes, places of worship, monuments, crematory, etc. If none, what are the parents’ core beliefs and wishes for such plans?
