Long-Term Care for a Special Needs Child: What to Ask

Takeaways

• Making long-term care decisions for an adult child with disabilities involves balancing their preferences and needs, family circumstances, and financial constraints. Working with a special needs planning attorney is crucial for navigating these complexities.

Irish actor Colin Farrell, star of the TV crime drama “The Penguin,” made recent headlines in connection with his 21-year-old son James, who has a genetic developmental disability called Angelman syndrome.

In an interview with Candis Magazine, Farrell explained why he and James’ mother, model Kim Bordenave, decided to arrange for long-term care in a residential setting rather than caring for James themselves.

When a child with a developmental disability reaches adulthood, parents typically continue to be involved as caregivers, either providing direct care or arranging it. While acting as legal guardians of adult children with certain disabilities, parents can play a critical role in determining where the child resides and what kind of care they receive – whether it’s at home or elsewhere.

“It’s tricky – some parents will say, ‘I want to take care of my child myself’, and I respect that,” Farrell remarked.

“But my horror would be, what if I have a heart attack tomorrow, and, God forbid, James’ mother, Kim, has a car crash and she’s taken too – and then James is on his own?” he added. “[He’d be] a ward of the state. And he goes where? We’d have no say in it.”

Making the Right Decision

Placing an adult child in long-term care can afford some parents a sense of security about their child’s life should the parents pass away. However, it is also possible to protect a child’s future while the child remains at home or in another community setting. An individual with a disability like James would not necessarily become a ward of the state if his parents undertook effective long-term care planning.

Some families may consider a long-term care facility or a group home best for the disabled individual and or the family as a whole. Others prefer in-home care options that involve hiring a caregiver to provide support at home. Some families may choose to do most of the caregiving themselves, with the child living at home, on the property, or nearby. Whatever they decide, families should work with a special needs planning attorney to create a comprehensive long-term plan.

Care decisions are personal and complex. The ideal option for the person with a disability and their family depends on many factors, which a special needs planning attorney can help navigate. They can walk families through key considerations when deciding about long-term care.

Long-Term Care

According to the U.S. Department of Health and Human Services, approximately 12.7 million Americans–nearly 30 percent of people with disabilities–require long-term care. Long-term care involves help with basic activities of daily living (ADLs) like dressing or bathing. It can encompass medical care, depending on the person’s needs.

Options for long-term care for a person with an intellectual disability include the following:

• Intermediate care facilities are long-term residential care facilities that provide extensive day-to-day care.
• Nursing homes can provide care for individuals with significant medical needs.
• Assisted living facilities may provide individual apartments while also offering help with ADLs such as meal planning, bathing, and medication management.
• Group homes offer support in a community setting. People with developmental disabilities can live independently from their families while receiving assistance from staff.
• Home-based care allows someone with a disability to live in their childhood home, in an accessory dwelling unit (ADU) or separate apartment on family property, or on their own. Professional or family caregivers provide support.

A Shift Away From Institutions

Historically, institutions housed individuals with severe disabilities, separately from the community. In the 1999 landmark Olmstead case, the United States Supreme Court held that isolating an individual with a disability in an institution constitutes discrimination under the Americans with Disabilities Act (ADA).

Today, many people with developmental disabilities live and receive care within the community. Long-term care facilities also tend to provide opportunities for residents to interact with the community, such as through planned outings.

Key Considerations

In making long-term care decisions for an adult child with severe disabilities, parents must keep in mind what is best for their child. Their values and beliefs, the child’s needs, and personal circumstances all shape these decisions.

Several important considerations are involved. These include the preferences of the individual, their needs, family circumstances, and any financial constraints.

The Preferences of the Person With a Disability

Parents acting as legal guardians for adult children should honor, to the greatest extent possible, their child’s preferences regarding where they want to live and receive care. This respects the autonomy of the person with a disability and reflects law and policy involved in guardianships. Guardians should work with the disabled individual when making arrangements, getting as much input as possible from the person.

Some may prefer to continue living at home into adulthood. Meanwhile, others may enjoy living separately from their parents, appreciating the social and enrichment opportunities that a long-term care facility can provide.

Parents may consider the following questions:

• What does the child want?
• Where would they be happiest?
• What activities does the individual enjoy doing at home and in the community?
• Would the individual be excited to live away from family, make new friends, and experience greater independence? Or would they be more comfortable with family at home?
• How would each option – living at home, in a group home, or in a facility – affect the child’s sense of autonomy and independence?

The Needs of the Individual

Every individual with a disability has unique needs. For instance, a person with a medically complex disability might require nursing care or specialized therapies. Any long-term solutions should address these needs.

The following questions can help parents identify their child’s specific needs:

• What are the child’s medical needs?
• Do they require access to certain therapies, supports, or classes?
• Do they rely on a service animal?
• How many hours of care do they need per day?
• What can they do on their own, and what do they need help with?
• Are they on a specialized diet?
• What medications do they take, and do they need any help with them?

Family Circumstances

Just as everyone with a disability is unique, each family has its own considerations and circumstances, which these questions can illustrate:

• Can the family provide caregiving?
• Who will care for the person with the disability if they live at home?
• Are the caregivers healthy? Who would take over if the primary caregiver becomes sick or passes away?
• Is there family conflict, such as divorce?
• Is the individual with the disability safe in the home?
• Would family members be able to visit a group home or long-term care facility?
• What values are most important to the disabled individual and their loved ones?

Financial Considerations

Families and individuals with disabilities also have financial considerations:

• What is the cost of care for each long-term care services option?
• What would public benefits cover? For instance, Medicaid may fund state waiver programs for in-home care and intermediate care facilities for individuals with intellectual disabilities.
• Can the family afford for a parent or other relative to stay home and care for the disabled individual?
• How much would building a separate apartment or ADU cost?
• Is there a special needs trust that could provide financial support?
• Does the individual with the disability receive Supplemental Security Income (SSI) that could cover rent?

Working With a Special Needs Planning Attorney

Making purposeful decisions about who will care for a child with a disability over the long term and where the child will live is essential to securing their well-being into the future. A special needs planning attorney can assist in navigating decisions about the most suitable types of  care, identifying options, executing necessary documents, and handling challenges.

An attorney can also offer families with crucial support in many areas, including:

• Becoming the legal guardian of an adult child
• Making a special needs trust
• Outlining a personalized care plan
• Applying and remaining eligible for public benefits
• Creating an estate plan to provide for the child if the parents pass away

Find a local, qualified special needs planning attorney today.