Plan Ahead

Having a plan for a child’s life is more about working towards a goal than about the end destination. Being organized, and having a plan in place in case of an emergency or an unanticipated event will help ease the stress when something unforeseen occurs.

Instituting a proper plan means taking into consideration many facts – such as a person’s health, education, family finances, or level of ability. Of course, it’s impossible to have a plan for every possible contingency. Having a plan for some events, however, will make children, and families, feel secure.

Who will care for your child in the event of an emergency?

When people make the choice to have children, it’s with the assumption that they will always be there to see a child safely into adulthood.

But parents of children with Cerebral Palsy – especially if it is clear that a child will require a lifetime assistance – must ask: Who will make decisions about my child’s well-being if I’m in a debilitating car accident? If I require surgery and long-term rehabilitation? Or, if I should suddenly pass away?

The answer to this question is multilayered; it involves a number of legal and financial mechanisms designed to protect a child both physically and financially. It also involves having to investigate who is the best choice to make decisions about a child’s health and education, medical treatment, and other matters that a parent may typically address on their child’s behalf.

Most of all, a designee should be a person that can fulfill the role of a parent. In the best-case scenario, they should provide encouragement, show an interest in a child, and be a source of love and support in a child’s life before such a scenario becomes a reality.

Choosing a person to be a legal or temporary guardian, or a conservator to oversee a child’s finances, is a vital aspect of ensuring the security of a child. It is of particular relevance if a parent is single and the other parent is incapable of stepping in to be a full-time caregiver.

This is not to say that all people with disabilities are incapable of managing their affairs; that’s clearly not the case. However, when a person is underage, or they have developmental disabilities that can interfere with their ability to make decisions, there needs to be a trusted adult standing by to help sort out the important stuff. That person will need to step into the parental role quickly, and unexpectedly.

Guardianship and conservatorship

During the planning process, it can be helpful for parents to think about three aspects of their child’s well-being – the first is the day-to-day aspects of living, the second is financial and third is the consequences of not making provisions. The first can be handled by a temporary or permanent guardian; the other is handled by a conservator.

Though the state laws vary regarding the appointment of both guardians and conservators, one person usually fulfills both roles, sometimes two.

Guardianship and conservatorship are not mutually exclusive terms. A guardian is a person that manages the personal, medical, and educational affairs of a child or a person with disabilities that cannot function alone. A conservator is responsible for a person’s income and overall financial outlook. Depending on the nature on a person’s disability, they may require only one or the other, but a person with disabilities may need both to ensure their future financial stability, health, and safety.

Local family courts appoint guardians; where conservators are most often appointed through special needs trusts, which can be established to preserve the assets of a child or person with disabilities without negating his or her government assistance or benefits.

A guardian may receive monies from a person’s social security or disability payments to pay for everyday needs that help a child or adult function. A conservator manages assets and monies beyond everyday expenditures because the trust they oversee preserves assets and funds that are not considered income and that are not counted as assets for the purpose of qualifying for government benefits.

A good analogy to illustrate the difference between a guardian and a conservator is this: When an 18-year-old child receives a social security or disability check, a guardian is able to take that check to the bank, cash it, and then buy groceries and pay the electric bill. A conservator would not be able to cash the check to handle either task.

Guardianship is relevant when a child turns 18-years-old. At this time – regardless of what his or her mental capacities are – a child becomes a legal adult. If a child cannot make decisions by themselves, it is advisable that a parent go to court to be appointed a guardian to ensure that the child’s needs continue to be met. This is also a good time to develop a special needs trust if one is not in place already.

The consequences of not having concrete provisions in place for a child with disabilities can be dire from a personal and financial perspective. If there is no clear plan for guardianship filed with the court – whether it is temporary or permanent – a judge could institutionalize an individual until the time that a parent can re-assume their role, or someone that cares for a child can step up and prove they can provide a good home. Though institutions are more humane than they were several years ago, it’s still not an ideal environment for a child, or an adult.

When it comes to monies and resources, having an inadequately-constructed special needs trust can also cause problems that could put assets and governmental benefits at risk. If there is wording that is not understandable, or if there are assets that are for whatever reason left out of the trust, those could be applied to pay-back provisions under Medicaid, or counted as income, which could make a child ineligible for governmental benefits.

Patient advocate

Parents may also come across the term “patient advocate” when planning for their child’s future. A patient advocate can either be a family member or friend, or a professional employed by a hospital or healthcare organization.

The advocate acts a liaison between the patient and health care providers, assisting in medical decisions and accompanying the patient to appointments, treatment, and emergency room visits. . A patient advocate also has the power to make medical decisions for a person when the child’s parent is incapacitated. A person must agree to be an advocate before being named as one.

A guardian typically can assume responsibility for a child’s medical decisions; therefore, a parent typically does not have to name a separate advocate if guardianship is established.

Durable power of attorney

The establishment of guardians and conservators should be designated before an emergency occurs and the parent is of sound mind to make such decisions. Often parents establish guardianships only when told they have health conditions that will lead to their inability to manage their child’s affairs – in the case of the onset of dementia or after receiving a diagnosis of terminal cancer. Postponing can be risky.

But what if a parent needs only to have someone serve as a temporary guardian?

Most states have provisions by which a parent can appoint a temporary guardian to oversee a child’s activities and secure living arrangements. In such a scenario, the guardian would be able to make all the decisions a parent or permanent guardian would make – but only for a predetermined, finite amount of time.

Another path a parent can follow to empower someone else to make decisions on their child’s behalf is called durable power of attorney. Also known as the attorney-in-fact, the person who is given this designation can make vital decisions about finances, living situations, education, and health care.

Durable power of attorney should be established before the onset of medical problems or other issues that negate a parent’s ability to care for their child. This is a precautionary measure to ensure a child’s security if there’s an accident or other unforeseeable situation that immediately incapacitates the parent.

Often, a parent can ask a judge to grant more than one person durable power of attorney to mandate joint decision-making among individuals. Parents who prefer that decisions be made jointly choose this option; it’s a matter of personal preference.

Durable power of attorney ends, however, when a parent dies. At this time, the person who holds the durable power of attorney regarding the decedent’s son or daughter would be required to seek permanent guardianship through the court system.

Special needs trusts

For families that include a child with Cerebral Palsy, government benefits are a lifeline. They help pay bills, provide housing, and pay for medical treatments that would often be out of reach if such benefits disappeared.

Losing governmental benefits is a fear parents typically think about as they begin planning for their child’s future. The special needs trust, or a supplemental needs trust, holds intact all of a child’s future assets while preserving their eligibility for governmental benefits. Drafted properly, the trust will secure a child’s assets and his or her benefits. Drafted improperly, the result could be catastrophic for a child.

Though special needs trusts can be established any time before a beneficiary turns 65-years-old, it’s best for parents to solidify as early as possible. A special needs trust can be revised as needed, just as one would update a last will and testament. It is recommended that the special needs trust establish a conservator, or trustee.

A special needs trust should have provisions within it that prevent the government from seizing assets or monies allocated to the beneficiaries. If it does not, a child or adult with special needs could incur financial losses that would be difficult, or impossible, to recoup.

A parent should schedule a meeting with an attorney that specializes in estate planning to begin the process of establishing a trust. The attorney should be able to explain how state laws regarding conservators, guardians, durable power of attorney, and any other outstanding issues apply to a family’s specific concerns.

The back-up parent

Words like “guardian” conjure up images of legal scales and courtrooms. There’s another way to look at guardianship, however. A guardian should make sure bills get paid and provide food for the table. He or she also should dry tears, provide sage advice, give hugs, and make sure that your child is happy and thriving at a fundamental level. In short, a parent is searching for someone to love his or her child.

To say that it’s an important decision for a parent to find the person that can best fill this role is an understatement. A guardian should be immediately qualified to handle a child’s needs in a way that is seamless and caring, there may not be time for a learning curve.

For a parent, the first step is to determine who can care for a child in his or her absence. Often, a family member such as a grandparent, older sibling, or stepparent is considered. Legally, anyone can be appointed a guardian (or a conservator, for that matter). Close family friends are also primary considerations.

In a best-case scenario, a child should have an active and close relationship with a potential guardian. If a parent is suddenly unable to make decisions, the guardian and child will have an established rapport, minimizing the child’s anxiety and apprehension. If a parent dies, a child will already feel vulnerable; adding a guardian into the mix that he or she is unfamiliar with can make a child – or adult – feel further destabilized.

Making a decision about who would be an excellent guardian can be made by observing the individual with a child. Does he or she exhibit parental qualities? Does the individual seem to connect on an emotional level with a child? Does the individual have the ability to act as a parent? Is his or her lifestyle conducive to parenting? Does the potential guardian have a value system that is commensurate with the parent?

Once the parent has chosen a guardian, and the potential guardian has agreed to the arrangement, a parent must make sure that the person they chose is up to speed on all aspects a child’s medical, educational, and physical needs and activities.

A parent should keep accurate records, document appointments on the calendar, and store records in a known area so the guardian can assume responsibility without undue labor to locate paperwork, medical records, social services files, education plans, or prescription information. Also, a parent should make sure the guardian knows where to find any and all pertinent phone numbers in case they have to make contact with the child’s school or a member of their medical team.

Making the decision about who will care for a child is challenging for parents because it’s difficult to accept that the day may come when he or she cannot care for a child. Once it’s done, a parent will appreciate the fact that a plan is in place that will protect their child if that day comes.