Your son turned 18 last month. He still finds comfort in routine, struggles with unexpected changes, and needs support making major decisions. But legally, everything changed overnight. The school can no longer discuss his education plan with you. His doctor won't return your calls. You've spent 18 years advocating for him, and suddenly the law treats you like a stranger.
This jarring transition catches thousands of families unprepared each year. Our Pennsylvania estate planning attorneys work with families facing exactly this situation: the moment when a child with autism spectrum disorder reaches legal adulthood, but their need for guidance hasn't changed. With proper special needs planning, you can create legal frameworks that protect your loved one while respecting their independence and preserving access to critical benefits.
Should You Pursue Guardianship or Powers of Attorney?
Pennsylvania law presumes all adults possess full legal capacity to make their own decisions. This presumption applies regardless of disability or diagnosis. Once your child reaches adulthood at age 18, you need legal authority to continue helping with major decisions.
Healthcare and Financial Powers of Attorney
Powers of attorney (POAs) offer protection while preserving autonomy. If your adult child understands they need help with certain tasks and can sign legal documents, powers of attorney might provide adequate protection without court involvement.
- A healthcare power of attorney lets you talk with healthcare providers, make medical decisions, and access records.
- A financial power of attorney grants authority to manage specific money matters without removing all financial independence.
Powers of attorney won't work if your loved one cannot understand they're giving someone else decision-making authority, shows significant vulnerability to exploitation, or lacks insight into their own limitations.
How Guardianship Works in Pennsylvania
Pennsylvania law recognizes both full guardianship of incapacitated adults (broad authority over personal and financial matters) and limited guardianship (authority restricted to specific areas where help is needed).
The court must consider whether less restrictive options, like powers of attorney or joint accounts, can adequately protect your adult child before granting guardianship. Courts strongly prefer limited guardianship that preserves as much independence as possible, removing only those rights the person cannot safely exercise.
Default Healthcare Representatives
Without special needs planning, it can be unclear who should make medical decisions and providers may hesitate or demand extra proof, even though default healthcare representatives are recognized by law.
Under Pennsylvania's Act 169, if an adult lacks capacity and has no healthcare agent, certain family members can act as healthcare representatives and make decisions, including in emergencies. However, formal planning through a healthcare power of attorney provides clarity, prevents family conflicts, and eliminates delays when quick decisions matter.
How Do You Protect Government Benefits?
For adults with disabilities who qualify for SSI and related Pennsylvania Medical Assistance, countable assets generally must stay at or below $2,000. If your adult child receives an inheritance, lawsuit settlement, or saves too much money from work, they could lose benefits once assets exceed this threshold.
Social Security Representative Payee
For SSI or SSDI benefits, a parent can often be appointed as a representative payee to manage monthly payments without pursuing guardianship. This option works well for adults with autism who can't safely handle cash but don't need formal incapacity findings.
Special Needs Trusts
First-party special needs trusts protect money your child receives directly, like through inheritance, settlements, or savings. Assets in these trusts don't count toward benefit limits if the trust is established before age 65 and includes a Medicaid payback provision.
Third-party special needs trusts hold gifts and inheritances from family members. Parents typically establish these in their estate plans, directing that any inheritance should go into the trust rather than directly to their child. Unlike first-party trusts, these don't require Medicaid payback.
ABLE Accounts
Pennsylvania's ABLE accounts provide a simpler way to save smaller amounts without affecting benefits. These accounts allow contributions up to the federal annual ABLE limit (currently $19,000 per year, subject to periodic adjustment) for qualified disability expenses.
Work Incentives and Employment
SSI and SSDI include work-incentive rules that let beneficiaries work and still keep some or all benefits. ABLE accounts can help shelter savings from earnings. If your adult child has employment goals, discuss work incentives with an attorney familiar with disability benefits.
Disabled Adult Child Benefits
For adults with autism whose disability began before age 22, Disabled Adult Child (DAC) benefits become available when a parent retires, becomes disabled, or dies. These SSDI-based benefits can significantly change income levels, tax planning, and Medicaid coordination.
Why Work with a Paoli Special Needs Attorney?
Special needs planning requires understanding Pennsylvania estate law, federal disability programs, healthcare regulations, and guardianship procedures. Mistakes can have devastating consequences, from lost benefits to family conflict and inadequate protection.
At Ruggiero Law Offices, we've worked with Pennsylvania families facing adult autism planning challenges since 1990. We help families assess which legal tools fit their situation, structure planning around benefit preservation, coordinate representative payee appointments, update beneficiary designations, and prepare for future transitions, including parental retirement and DAC benefits.
Your goal isn't to take away your adult child's independence. Rather, it's to build a framework that lets them live their best possible life with protection against exploitation.