By Barbara Pierce
Thinking about what the future holds for their child as they become an adult is perhaps the most challenging part about being the parent of a child with a disability.
It’s a lot to think about.
Providing for a child with a disability as you age requires legal and financial planning to ensure their long-term care without disqualifying them from government benefits. We asked Francesca Bevivino, guardianship and outreach coordinator at The Arc Oneida–Lewis Chapter to help us understand what we should consider as we age.
Q: When should I begin planning for my child’s future?
“You’ll want to start a future plan when your child is first diagnosed. Not just to determine what services they’ll need, but how you’ll care and maintain the life of your child going forward.”
“Your child’s diagnosis is primary. It’ll help you know which path to take. You’ll want to get your child eligible for the relevant state agencies, the sooner the better.
Q: What should I consider when my child turns 18?
“Remember that under the law we’re an adult when we turn 18. Regardless of the disability, our loved ones become adults at 18. They’re able to sign for themselves, make medical decisions, any decisions for themselves.”
“The solutions for this are individually based,” she added. “In the teen years, start the process of thinking about what street to go down for guidance, oversight, and advocacy.”
Supported Decision Making, a groundbreaking law in New York state, went into effect in 2024. It’s a less restrictive alternative to guardianship and starts with the belief that everyone has the right to make decisions and have those decisions legally recognized.
It’s the least restrictive way to go and individually driven, she added. The individual works with a team of supporters who explain it in an understandable way. A supported decision making plan can be a good fit if the individual can express his preferences and voluntarily enter the agreement, even if he needs support across most every aspect of life.
“The next thing is power of attorney, which is individually driven,” she said. The individual must show they understand this action and must consent to the person to whom they are signing over their rights. It requires an attorney.
“Also, a health care proxy is required for medical advocacy,” she added. Article 81 allows the courts to appoint a guardian for adults who are unable to manage their personal or financial affairs due to their disability. It also requires an attorney to accomplishannual reporting.
Article 81 is considered a last resort. If a power of attorney and health care proxy are already in place, guardianship may not be necessary.
Q: I understand that to continue to be eligible for SSI and Medicaid, my child cannot have more than $2,000 in assets. How can I ensure that his needs above that will be met?
SSI, or Supplemental Security Income, is a monthly federal government payment for those with a disability. To receive SSI, your adult child cannot have money or assets worth more than $2,000. Receiving SSI qualifies one for Medicaid.
“I work with NYSARC Trust Services,” said Bevivino. “They are an independent fiduciary service providing special needs trusts for individuals with intellectual or developmental disability.”
“A trust is a way for families to set aside funds for their loved one, such as proceeds of the sale of a house. To protect their benefits, their inheritance can go into a trust and not interfere with Medicaid,” she added. “It can then provide for things above and beyond what Medicaid provides.”
“That trust fund needs to be established beforehand,” she said.
Q: What about an advance directive or DNR (do not resuscitate)?
“Our community, because of ills of the past, can’t put into place an advance directive or DNR until the person has a terminal diagnosis. Intellectual and development disability is not a terminal diagnosis,” she replied. ”We have to go through steps. Two MDs and a psychologist must concur with the terminal diagnosis.”
Q: Can you help us negotiate the legal decisions we face?
“Since I’m not an attorney, I can’t provide legal advice,” Bevivino said. “I usually refer the family to an elder estate attorney. I can work with families to complete the application process for guardianship.”
Francesca Bevivino can be reached at The Arc at 315- 927-0088 or francesca.bevivino@thearcolc.org.
Barbara Pierce is a retired licensed clinical social worker with many years of experience helping people. If you would like to purchase a copy of her book, “When You Come to the Edge: Aging” or if you have questions for her, contact her at barbarapierce06@yahoo.com.