Parenting can be challenging, even at the best of times. Add a neurologically impaired child to the mix and it can be even more daunting. The day-to-day demands can be all-consuming, to the point of shutting out any thoughts of the future.

"My plan, like that of most parents of disabled children, is to live forever," quips Shannon Penrod, the mother of an 11-year-old boy with autism and host of Autism Live, an interactive web show that's underwritten by the Center for Autism and Related Disorders, an organization with 31 treatment centers around the country that specialize in applied behavior analysis therapy, a treatment approved by the American Academy of Pediatrics. "Discussing anything else elicits a panic attack," Penrod says.

"It can be intimidating to think about your child's future 20 or 30 years down the road," agrees Adrian Kuzel, a mother of 11-year-old twin boys, one of whom has autism. "But once you start planning, you feel relieved because you're no longer pretending you don't have to do it."

For Saundra M. Gumerove, an attorney in Long Island, NY, and the mother of an adult child with Sturge-Weber syndrome, a condition that causes neurologic symptoms like seizures, planning for the future comes down to two things: "Who's going to take care of my daughter and how do I maintain her quality of life after I'm gone?" Those are the questions, she says, that keep her and her clients, who are parents of disabled children, up at night.

We reached out to experts to get some answers.

Assess Your Child's Abilities

To determine how much support your child will need as an adult, it's important to assess his or her functional and cognitive abilities. Schedule assessments with your child's neurologist regularly in childhood, then on an ongoing basis as you notice changes in your adult child's abilities or behavior, says Ira T. Lott, MD, a pediatric neurologist and emeritus professor at the University of California, Irvine. And be sure to address any physical problems, especially as they relate to heart, kidney, and liver health, he says.

Keep notes on your child's status, including how well he functions day-to-day, whether he can take medication or groom himself independently, how well he responds to verbal prompts, if he's interested in interacting with other people, and whether he has sound judgment, Dr. Lott says. Determine what sort of real-world skills your child has demonstrated. Can she go shopping, make change, or take public transportation on her own? How about crossing the street safely or using a phone or computer, or navigating the Internet? "It's got to be approached very systematically," Dr. Lott says. If you thoroughly assess all this information, he adds, "you can often get a pretty good sense of what your adult child will be able to do in 20 to 30 years' time."

Talk to a Lawyer About Legal Guardianship

If your child won't be capable of making practical, health care, or financial decisions for herself as an adult, you'll want to establish legal guardianship for her when she turns 18, says Gumerove. This way, you'll retain the right to make decisions on her behalf. "If you need it and you don't have it," Gumerove says, "it's hard to get it quickly because it requires a court hearing."

If you die before your child and no legal guardian has been assigned, your child could be declared a "protected person" or a "ward of the state," which means that your child and all his or her assets would be under the custody of the state, an event that may affect his or her care, says Laura Hutton, a social worker in the department of neurology at Children's Hospital Colorado in Aurora. That's why she and other experts recommend naming co-guardians or primary and secondary guardians. "There may come a point where one guardian won't be available to execute care or guardianship," Hutton says.

Form a Team

Instead of entrusting your child's future to one person, experts recommend assembling and assigning different responsibilities to different team members. One person could be the back-up guardian to succeed you; another could have power of attorney to make health care decisions; a third could oversee any trusts in your child's name; a fourth could handle other aspects of your child's finances. To eliminate any doubt about who's doing what, have a lawyer put it in writing for you.

This can be a good way to get the child's siblings involved without having them assume total responsibility.

Budget for the Future

Preparing for your child's financial future can be complicated, especially because the logistics and options vary from state to state. To ease the process, look for an attorney who specializes in estate planning (ideally someone familiar with the needs of individuals living with disabilities) as well as a financial planner. "You need to budget enough money for your own life and to provide for your child," says Martin M. Shenkman, an attorney specializing in estate planning in Paramus, NJ. Factor in the cost of housing, food, clothing, medical expenses, transportation, and so on. "Project how much you're spending now and what you'll need for the future," Shenkman advises. "Then move toward a spending level you can maintain for your life and your adult child's life."

If your finances are limited, talk to a social worker or your state's Legal Aid organization, which provides free legal services for low-income families, seniors, and people with disabilities. They can help you navigate government assistance and services to help plan and budget for your child's future. 

Set Up a Trust

Establishing a special needs trust through a lawyer allows your child to access government assistance programs and receive supplemental security income (SSI) benefits after age 18 if he or she is unable to work, as well as Medicaid (or Medicare) coverage, without having to exhaust his or her own money or inheritance first, says Allison Bren Ferris, head of special needs trust services at Wells Fargo Private Bank. "The financial impact of losing these services could be devastating."

The special needs trust is used to pay for items not covered by public benefits, such as special camps, hobbies, specialized medical equipment, computers, and therapy animals, after your death, she says.

For families with limited income, Bren Ferris suggests joining a special needs pooled trust, in which the resources of many beneficiaries are pooled together and managed by a non-profit association, and funding it with life insurance proceeds that name the trust as the beneficiary. Like individual special needs trusts, pooled ones don't jeopardize SSI or Medicaid benefits, says Bren Ferris. 

Draft a Dossier

If you've been the main caregiver for your child and are worried about how well she'll be cared for after you're gone, keep a list of details you feel would be important for future caregivers to know and update it regularly. It can include medical history, medication records (which drugs helped, which didn't), test results, likes and dislikes (foods, activities, people), and personal habits (preferring to fall asleep to music, for example). "It's something a lot of people don't think about," Gumerove says, "but that's golden information for people to know."

You can even specify that your child should be allowed to make certain decisions herself. "It can be as simple as stipulating that she gets to choose her own food or pick out her own clothes," says Maria T. Acosta, MD, a child neurologist at the Children's National Health System in Washington, DC, and a member of the American Academy of Neurology (AAN). "With children who have severe impairments, it's easy to see what they can't do, but it's important to recognize what they can do."

Secure a Home

To determine where your child will live after you die, consider all the options—living at home with visiting nurses, home health aides, or other professionals, residing with another family member, or living in a group home or an institution—and convey those wishes in your will and whatever trusts you establish. And, if possible, transition your child into his or her permanent home while you're still alive, says Jacqueline French, MD, a professor of neurology in the Comprehensive Epilepsy Center at the New York University Langone School of Medicine and a Fellow of the AAN.

If you plan to put your child in an institution, do a thorough evaluation before choosing one. Ask about the ratio of staff/caregivers to residents, the level of on-site medical care, and recreational activities. Observe the cleanliness and friendliness of the facility, check the visitation schedules, and get a sense of whether family involvement is encouraged. And research the organization online with the attorney general in your state, advises Gumerove. "Has the organization been cited? Does it have a lot of legitimate complaints against it? Every organization has some complaints, but some are more serious than others."

Terms You Should Know

Don't let the legal and financial jargon get you down. We asked our experts for this cheat sheet to keep you in the know.

LEGAL GUARDIANSHIP: Appointing someone who will make important decisions about a dependent person's finances, medical care, or other issues; guardianship is established in the courts and all decisions made by the guardian must be approved by the court. (Also called "conservatorship.")

POWER OF ATTORNEY: A legal document created by one adult granting control over medical, financial, guardianship, or other decisions to another adult, in the event that the creator of the document is rendered incapacitated. No court is involved.

SPECIAL NEEDS TRUST: A specialized legal document that allows you to hold assets for a disabled person without having those assets interfere with his or her eligibility for government benefits (Medicaid, Supplemental Security Income, subsidized housing, and so on). (Also called a "supplemental needs trust.")

Help Is Here

These resources can help guide you through your preparations.

There's no need to go it alone when planning your dependent child's future. Many organizations are available to help you navigate the legal, financial, and even emotional steps. Plus, you'll meet other families in similar situations who can share their experiences and ideas, says Colette Christen, a family navigator for neurology at Children's Hospital Colorado. Here are some resources to help you take the first step.

Advocacy Groups

• Autism Speaks: autismspeaks.org ; (888) 288-4762
• Brain Injury Association of America: biausa.org ; (800) 444-6443
• Epilepsy Foundation: epilepsy.com ; (800) 332-1000
• Multiple Sclerosis Association of America: mymsaa.org ; (800) 532-7667
• National Disability Rights Network: ndrn.org ; (202) 408-9514
• National Down Syndrome Society: ndss.org ; (800) 221-4602

Government Assistance

• For information on housing, health care, and financial aid, contact your state agency for Protection and Advocacy Systems and Client Assistance Programs.
• For information on Supplemental Security Income (SSI), consult the Social Security Administration.
• See a list of neurologic conditions that qualify for disability payments under Social Security.
• To determine whether you qualify for government assistance programs for health care and for information about what's covered: medicaid.gov (for Medicaid) and medicare.gov (for Medicare).

For help with housing, including finding low-income housing options:

• The National Center for Assisted Living
• The US federal government's website for information on disability-related services.
• The US Department of Housing and Urban Development's page on vouchers for people with disabilities.

Aid Services

• For information on joining a pooled special needs trust, visit the Academy of Special Needs Planners.
• For free legal services, contact your local legal aid society.
• For general information about rights, education, employment, and long-term support for people with disabilities, visit The Arc.