April is National Autism Awareness Month in the United States. It’s a time of year that is dedicated to educating the public about the special needs and challenges facing those individuals living within the autism spectrum disorders (“ASDs”). ASDs are a group of developmental issues that are shown to affect social, communication and behavioral functioning.

According to statistics released by the Centers for Disease Control and Prevention in 2014, the disorder affects 1 in 68 children in the United States, reflecting a 30% rise in the rates of the developmental disorder over the course of the 2 years before that. Trends also show that autism remains almost five-times more common among boys than girls.

“Behind each of these numbers is a person living with autism,” according to Liz Feld, president of the advocacy group Autism Speaks. “Autism is a pressing public health crisis that must be prioritized at the national level.” (Source: CBS

Beyond ASD, though, there are many local families with a child with special needs. In honor of Autism Awareness month, I’ve dedicated this blog post to all of our Massachusetts families who face the daily challenges and rewards (because we can never forget about the love and joy each special person brings into our lives) of living with a family member with special needs.

Legal challenges faced by families of children with special needs

While autism awareness and the awareness of other special needs is at an all time high, many parents and families are still in the dark as to how to make sure their child is physically and financially cared for in the event of a parent’s unexpected death or incapacity.

As much as parents of special needs children hate to think about it, there will come a time when they are physically unable —or perhaps no longer alive — to oversee their child’s care and needs. That’s why long-term care plans should be put in place as soon as a diagnosis is made to ensure a child always stays physically and financially protected if the unthinkable occurs.

When children with special needs turn 18, many of them are entitled to valuable governmental benefits. Without proper legal planning, however, a family may risk the loss of those benefits long-term benefits.

3 key planning steps to protect your special needs child

While the options for long-term care planning are broad and will depend on the unique needs of each child and family, parents can simplify the process by starting with these 3 key planning steps:

  1. Name Guardians – Parents of a child with special needs should immediately name short and long-term guardians who can oversee their child’s care if something unexpectedly happens to them. Without guardianship designations in place, a child could end up in a lengthy custody battle or placed with someone who isn’t familiar with and equipped to properly care for your special needs child if the unthinkable happens.
    When considering a guardian for your child, parents should think “outside the box” and focus on finding someone whose love and dedication to the child closely resembles their own.  And, once you’d made the decision about who fits that role best, be sure to talk to your prospective guardian to make sure they are able and willing to be a future guardian because it is a major responsibility. If they’re “on board,” be sure to give copies of your designations to the guardians themselves.
  2. Set Up a “Special Needs Trust” – One of the biggest mistakes that parents of a child with special needs can make is failing to create a financial plan that will protect governmental benefits available to their child.  Many of these benefits are “income based” and if a child with special needs suddenly has access to assets or property, they may lose these valuable sources of benefits.  A “special needs trust” is a legal tool that can help ensure a child’s health care and living needs are taken care of if something happens to a parent without jeopardizing access to government entitlements.
  3. Build a Team of Support – It’s never too early to begin building a team of trusted caregivers and advisors who can immediately step in and help the child if a crisis occurs. Team members may include the child’s legal guardians, a trusted doctor, financial advisers, an estate planning attorney and dedicated family and friends. Building such a team now also helps ensure that you have the right people in place as opposed to someone who will prey upon your child’s disability in an emergency.

Parents of a child with special needs should go into legal planning with the mindset that their child will require a lifetime of care. Fortunately, however, by starting these 3 key steps early, parents can make tremendous progress toward ensuring their child is physically and financially cared for in their absence.

If you’d like to learn more about legal planning for your child with special needs, contact one of our team members now.