Little Joanna Misercola has encountered a lifetime of challenges in her eight years. Diagnosed with the developmental brain defects schizencephaly and polymicrogyria, she struggles with severe developmental delays, seizures, impaired vision and weakness on the left side of her body.

Attention Deficit Hyperactivity Disorder and Autism Spectrum Disorders make it almost impossible for her to control her impulses, and lead to a host of behavioral difficulties and violent outbursts.

Just making it through routine tasks like getting dressed for school is an exhausting act of survival for parents Cheryl and Tony Misercola of Orchard Park. That’s partly why financial planning has fallen by the wayside.

“Financial planning? Let’s talk about bedtime planning or dinner planning or how we’re going to get through the day,” said Cheryl Misercola. “Financial planning just isn’t right there at the top of the list right now.”

But for parents of children with emotional, physical or developmental disabilities, planning the future is even more important, and takes extra time, money and skill.

Parents have to budget and arrange for such costs as recurring medical expenses, therapy and assisted living care, and plan to provide for them long after the child reaches age 18. In many cases, parents must figure out how to provide for their child after they themselves are gone.

Still, while 60 percent of affected parents don’t expect their children with special needs to be able to support themselves alone, 29 percent of them admit to not having a plan in place to provide for their children, according to a MetLife study cited in Financial Planning

Perspectives, a publication from the Financial Planning Association.

A whopping 68 percent said they had not even drafted a will.

Lisa Allen, a life and asset planning attorney at Harris Beach Attorneys at Law in Buffalo, knows the difficulties of special needs planning all too well. For decades she has helped local families navigate the same tricky process she has endured herself as the mother of a 24-year-old with profound disabilities.

“Families are so busy dealing with the crises of medical care that they put off planning for the future,” she said.

Allen is something of an expert when it comes to special needs issues. Among her long list of accomplishments is a grant project she put together as a law student, which eventually led to the creation of the New York State Medicaid Waiver Program. The Medicaid Waiver Program allows children with special health needs to qualify for Medicaid regardless of their parents’ income and resources.

“There’s a lot to know,” said Allen, who is also an adjunct lecturer at the University at Buffalo Law School. “I spend a semester teaching this as a course to my students, and some of them still fail their exams.”

For the Misercolas, it’s not so much that they don’t know where to turn for financial planning advice, it’s that they don’t know what to plan for. As an adult, will Joanna be able to live in an apartment on their property? Or will she need the level of care and supervision provided by an assisted living facility? There are a lot of variables.

“We’ve just tried to sock as much money away as we can in a tax-free account,” said Tony Misercola. “I know at some point we’ll need to sit down with someone.”

Special needs planning is something a lot of Western New Yorkers wrestle with. In fact, Mass Mutual recently added an entire division devoted to special needs planning after a study in 2009 revealed Buffalo has the 10th highest population of people with disabilities in the nation.

“As a parent, you concentrate 100 percent of your energy and time on caring for your child and little time planning to assure your child receives every possible level of care ... [after] they themselves become unable to care for their child,” said Joseph Di- Leo, a special care planner at Mass Mutual, whose daughter and aunt have special needs.

When doing your own planning, the help of a certified financial planner and a knowledgeable attorney are crucial. Until then, here are some basics to help you get oriented.

Living Arrangements: There are three monthly Supplemental Security Income (SSI) benefit rates in New York State, which are meant to pay for the living expenses—such as food, utilities and lodging—of an adult with disabilities living at home. How much people receive depends on their living arrangements.

Most people tend to receive the “living with others” rate, which currently provides a monthly benefit of $697. That benefit amount is for people who live with other people and pay a proportionate share of household expenses.

But people in this bracket, once questioned by Social Security, often get pushed down into the “living in the household of another” bracket and see their benefit reduced to just $472.34 per month. Why? Because most recipients live in a private home with at least one parent. In most cases, there is no way the $697 benefit would cover an evenly divided portion of the mortgage or rent, gas and electric bills, and food for the entire month. Therefore, Social Security will say, the recipient is not paying his or her fair share, is not entitled to the “living with others” rate and will be dropped down to the smaller “living in the household of another” rate.

An excellent (and legal) way to avoid this, and to actually increase the benefit amount, is to achieve “living alone” status. This can be done even if the recipient is still living in the parents’ home. Doing so will bump up the benefit rate to $761 per month.

To do it, you’ll need to draw up a roomer-lodger agreement. Forms can be printed up free from Neighborhood Legal Services at NLS.org. The agreement states that the adult with special needs pays the owner or renter of the home a flat rate for room and board—perhaps a fair market value of $350.

A Social Security Income recipient can change living arrangements at any time. He or she merely needs to submit a statement to the Social Security Administration from the homeowner or lessee indicating the flat fee amount charged each month for room and board.

Guardianship: It may seem strange, but if your son or daughter is not able to be independent once he or she turns 18, you will have to prove it in court. You also will need to get a court’s approval to be appointed guardian of your own child.

It is a very serious proceeding that decides whether your adult offspring is capable of making his or her own decisions, and determines whether you should be given authority to make them on his or her behalf. With a guardian, the child’s power as a decision maker is diminished and you’re effectively given veto power over your child for the rest of his or her life. It’s something the courts don’t take lightly. The process is time consuming and involves thick stacks of paperwork and doctor affidavits.

At the same time you seek guardianship, you should also designate standby guardians. A standby guardian will be able to step in as guardian immediately after parental or other primary guardians die or become disabled. The standby guardian then becomes the primary guardian. Contrary to popular belief, a last will and testament does not grant guardianship for life.

Another misconception is that New York State will assume guardianship. The adult with special needs does not become a “ward of the state” if guardianship is not obtained by a parent. There is a list of priority candidates, starting with adult siblings, who can petition the surrogate’s court to become guardian if a standby guardian was not appointed.

Much special needs planning centers around providing for a child without disqualifying him or her from valuable government assistance programs. Most parents in New York State rely heavily on assistance from Medicaid and Social Security to care for their children. But well-meaning parents who set aside money for their children with special needs can actually do more harm than good leaving such an inheritance. That’s because SSIrecipients are allowed to have no more than $2,000 in their name. Anything over that and they start losing benefits.

A way to legally set aside extra money to cover your child’s needs without putting his or her benefits in jeopardy is to create a Supplemental Needs Trust. This money can be used to cover a wide variety of needs and comforts—preplanned burial expenses, clothing, legal fees, telephone bills, bus passes, magazine subscriptions, respite care, tickets to sporting events.

A Testamentary Supplemental Needs Trust is a trust that may be funded by a deceased person’s probate and nonprobate assets. The trust is included in a parent’s last will and testament and is created after the parent’s death once the will is probated.

A Third Party Living Supplemental Needs Trust is one parents create and fund while they’re alive. It can be done even before a child reaches age 18.A major benefit of this is that other people can give the child monetary gifts, or leave him or her money while the parents are still alive without jeopardizing SSI and Medicaid benefits. For example, aunts and uncles can give birthday cash, or grandparents can bequest money directly into the trust to be used right away.

NOTE: It is important to take special care when designating beneficiaries for things such as 401(k) accounts and life insurance. Naming the child with special needs as a beneficiary on such accounts can negatively affect his or her Medicaid and SSI coverage. Naming the trust as a beneficiary, however, does not.

If assets are mistakenly placed in the child’s name, he or she can still put them into a first party supplemental needs trust. The catch there, though, is that any money left over after the beneficiary’s death (up to the total lien amount) must be paid back to Medicaid, rather than left to someone else. Any other excess income or assets the beneficiary receives, such as lawsuit winnings or other windfalls, would also need to be placed in a first party supplemental needs trust.

For a helpful step-by-step planning guide, visit www.ddpc.state.ny.us , click on “Publications” and download “Planning for the Future.”

schristmann@buffnews.comnull