Mommy Talk

A Q and A With IKOR founder Patricia Maisano

February 23, 2009

As told to Susan Lindgren

Patricia Maisano, a registered nurse by training and founder of Kennett Square, Pennsylvania-based care management company IKOR™, works with families and individuals to manage short-term health crises and long-term health care issues for seniors, disabled adults and children.  Here, she weighs in on important life issues and offers her expertise to parents of the disabled.

What is the biggest difference for parents between a child born with a disability versus one that acquires a disability from an accident?  How will challenges and the approach differ for each?

In most cases, the difference begins before birth.  The parent of a child who will be born with special needs often has some period of emotional adjustment prior to birth, a period to prepare for the challenges ahead.  In some cases, the parents have made a conscious decision to follow through with a pregnancy or terminate a pregnancy due to a disability.  Psychologically, this is an element of control or choice over what is to come.  Parents can learn about potential challenges they will face before experiencing them.  The also have time to orient their relationship, to talk with each other and gain personal strength.

In the case of a child who acquires a disability from an accident, the parents often begin the journey with a healthy child.  They’ve had a period of days, moths and/or even years being the parent to a child with no disability.  The change in their life is often dramatic and always unexpected.  Financial demands, change in family dynamics, increased stress and the uncertainty of the unknown all come into play very suddenly with little time for adaptation.  It’s not unheard of for the parents of a child with an acquired disability to divorce from the stress and the damage to their relationship that has resulted.  

If the acquired disability has followed the path of a lawsuit, the stressors can be protracted, however, with this also comes a circle of support for the parents with the attorneys, additional care providers and experts involved.  These parents find themselves emotionally supported for years just to see the support fade away as the lawsuit comes to a close.  The often begin the process of adaptation only after everything is finalized.

How does a parent know when the equipment their child uses is no longer suitable for his/her needs?

If the child is receiving comprehensive follow-up medical treatment, the treatment providers will usually guide the parent when equipment is out-grown, whether due to the physical growth of the child or changes in the child’s condition that warrant a change in equipment.  Some of the needs for equipment changes can be obvious, such as a child in a wheelchair whose feet drag on the ground because of a growth spurt.  Some based on conditional changes are more subtle, for example, determining whether or not a PEG tube or vent tube is still really needed.  These can only be determined through medical testing.

In what ways should a family prepare financially for a disabled child?

One of the ways families can prepare for a disabled child’s needs is through the creation of a Special Needs Trust.  This is a specific trust vehicle that can be prepared by an attorney who specializes in such trusts and who understands the laws of the state where it will be written.  These trusts often allow for any lump sum of funds to be set aside for the “special needs” of the child and are protected from exposure to medical expenses, thus enabling some recipients to be Medicaid eligible.

For children who are capable of holding a job at some point in their life, what are some options?

For children who are at some point capable of holding a job there are training programs, sheltered workshops, and/or employers who have special programs within their companies depending upon the depth of child’s physical and or mental capabilities.

A parent will know that the school their child attends is suitable to his or her needs by taking the needs identified by the treatment team (doctors and therapists) to the school.  This should be done as soon as those needs have been identified or at the time of the child’s IEP (Individual Education Plan) meeting.  The IEP meeting includes the providers within the school system as well as the parents and homeroom teacher.  Most public schools are mandated to provide an education to every child who lives within their district, within the needs of the individual child.  So the list of needs provided by the treatment team, within reason, should not be considered a “wish list.”  These needs can include certain therapies, reasonable physical accommodations, and one-on-one attention.

Whether it is private or public, one of the key factors in choosing a school for a special needs child should be the school’s experience with this child’s specific situation, the skills of the staff and their ability to provide the services.  Generally, private schools do not have the financial resources to address the individual needs of a special needs child while a public school does.  The exception to this is a private school which was created to address a specific disability such as schools for the blind or deaf.

Home-schooling is another option; however, parents should consider the social benefits of a formal school setting, especially if the school is teaching other disabled children of the same age.   We have seen firsthand the excitement of a disabled child when he or she enters a school with others who have special needs.  The child no longer feels different; he/she is a “regular kid” in this type of setting.  This ability for socialization can go a long way to motivating a child to try new things and maximize his or her potential.

What options do families have for health insurance?

With most general health insurance plans, if a family had coverage in place at the time of the injury and the child was part of that plan, it will cover disabled children under the specifics of the plan.  While most children are no longer eligible to be covered under a parents plan once they turn 18 or have completed college, many plans do continue to cover a disabled child over the age of 18.  If insurance was not in place for a family or the child, Medicare is a viable option.  When a special needs trust is in place, Medicaid can typically be an option as well.  Medicare covers about 80 percent of the usual and reasonable costs of doctors, hospitals, testing, and some medication.  Medicaid covers 100 percent of all costs including medication.

In what ways can a professional care manager help a family and child with special needs?

A professional care manager can be enormous help to a special needs child and their family.  Following are just a sampling of the help they can provide:

-The care manager can coordinate services between providers, making sure that they all know who’s involved and what’s happening.

-They can facilitate the accurate communication of needs to the school, including changes to the plan as they occur.

-They can always move treatment on a forward-thinking path to assure the highest level of outcome (this doesn’t happen as you would think).

-They can work with the insurance company in lace to make sure everything that can be covered is covered.

-They can be an effective teacher for the family, with the ability to put results, conditions and options into easy-to-understand terms.

-They can assure that the care provided by everyone involved, from the doctors to the aides giving care in the home, are giving the best care possible for this one unique person, no cookie cutter approach.  As experienced and skilled nurses, the care managers can identify areas of care which haven’t been addressed and get them addressed by the appropriate provider.

-Lastly, among the many things a care manager can bring to the family is a plan of care both short and long-term with considerations for every medical, environmental and psychosocial issue for the child’s life.  A care manager can be a true guiding force for the family to benefit the child.

What is your biggest piece of advice for parents who want to successfully advocate for their child with special needs?

The biggest piece of advice I can give a parent who wants to advocate for their child is there is power in knowledge.  Learn all that you can.  Ask all the question you want (remember, there are NO dumb questions) and expect answers, even if those answers may not be what you want to hear.  All good decisions are based on knowing the facts.  In you, your child has something money can’t buy and a price can’t be put on the love of a parent.  You are an important part of the treatment team; remember that!