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As they reach adulthood, young people with disabilities reach a crossroads in care. As children, they may have relied on their parents for support. Should that continue now they’re adults? If not, how can adults with special needs access caregiving resources?
“This is one of the hardest transitions because all the childhood support goes away, and it falls to the family,” says private patient advocate Gerda Maissel, a board-certified physician and former healthcare executive who founded My MD Advisor, a private patient advocacy service in 2021. “I combine my clinical experience and business knowledge to help people with these exact types of transitions because they are so complicated.”
One of the biggest reasons finding care for adults with disabilities is so complicated is because care services are not sorted by the disabilities they support, Maissel explains, but rather by the services they offer. This is why it is essential to first understand the physical and emotional support needs of the person with the disability in order to determine the right care option.
Identifying support needs for disabled adults
“When choosing the right long-term care option, caregivers should consider the individual’s level of independence, medical and personal care needs and opportunities for social and community engagement,” says Nicholas Burnett, chief executive officer of Flatrock, Inc., a Michigan-based company that provides adult foster care services focused on adults with disabilities.
Here, Burnett shares the most important steps to take when selecting a care option:
- Assess individual needs first: Determine if round-the-clock care is needed or occasional assistance with activities of daily living (ADLs) is enough. “This will aid in deciding what the best caregiving route should be, especially when looking at long-term options,” he says.
- Ensure access to quality services: Caregivers should prioritize care that enhances quality of life, whether this is through in-home support or group home settings.
- Maximize community integration: Social engagement and skill-building programs are vital to promoting independence. “When looking at group home options, it is key to emphasize community involvement for your loved one,” he says.
A quick comparison of care options for disabled adults
This table offers a snapshot of care options for disabled adults, including key service offerings, so you can compare:
| Care option | Care type | Key service offerings |
| Family caregiver | In-home | Medication reminders. Cooking meals. Helping with errands. Household tasks. Creating shopping lists. |
| Companion care | In-home | Organizing the home. Keeping family in the loop. Socialization. Overseeing plans and scheduling. |
| Home aides | In-home | Bathing. Dressing. Toileting. Transferring. Continence. Feeding. |
| Licensed nurses | In-home | Monitor vital signs. External catheter care. Minor wound care. Lift operation. Ventilator operation. Administer medications (RN only). |
| Adult day care | Out-of-home | Social activities. Transportation. Meals and snacks. Personal care services, including support for ADLs. Therapeutic activities. |
| Independent living | Out-of-home, long-term | Transportation. Group dining experiences. Clubs and social activities. On-site services, including pharmacies. Nurse on staff. |
| Assisted living | Out-of-home, long-term | 24-hour supervision. Medication management. Recreational activities. Exercise and wellness programs. Assistance for adults with cognitive disabilities, including dementia. |
| Memory care facility | Out-of-home, long-term | 24-hour supervision. Sensory-friendly environments. Design to prevent accidents. Increased security to limit wandering. Patient-centered care. |
In-home care options for adults with disabilities
“In-home care allows individuals to remain in familiar surroundings while receiving the assistance they need,” Burnett says. Here, a closer look at in-home care options for adults with disabilities.
Family caregiver
“In some cases, it may make sense for an adult with a disability to live with a family member rather than hiring in-home care,” says Cory Reid-Vanas, a licensed therapist with experience working with caregivers of adults with disabilities. “This really depends on the family member’s skill set, available time, mental health and ability to take on caregiving responsibilities.”
Support offered by family caregivers:
- Medication reminders.
- Cooking meals.
- Helping with errands.
- Cleaning and other household tasks.
- Creating shopping lists.
Cost: While there is generally no cost involved with enlisting the help of a family member to care for an adult with a disability, the emotional toll can be heavy since the role is so demanding. Reid-Vanas recommends caregivers enlist the help of an outside person who can support you, like a therapist or consultant, to prevent burnout and stress.
“When looking at group home options, it is key to emphasize community involvement for your loved one.”
— Nicholas Burnett, chief executive officer of Flatrock, Inc.
Companion care
Companion care involves hiring a person to visit a disabled adult at their home at set times, whether it be hourly, daily or weekly. “Companions are great when you need a responsible person around,” Maissel says. They will most often do tasks traditionally done by a family member, she says, which means they do not provide physical or medical assistance.
Support offered by companions:
- Helping with errands.
- Household tasks.
- Organizing their living space or home.
- Keeping family in the loop.
- Helping to keep a senior engaged and entertained.
- Overseeing plans and scheduling.
Cost: According to the latest data from Care.com, the average hourly rate for companion care is $20.61. Search for companion care rates in your area here.
Home aides
Similar to companions, home aides, or home health aides (HHA), visit adults in their home, but they do more hands-on care, Maissel explains. “Unlike a family member or companion, aides are more physically and intimately involved with ADLs, such as helping with showers and changing clothes,” she says.
Support offered by home aides:
- Bathing.
- Dressing.
- Toileting.
- Transferring.
- Continence.
- Feeding.
Cost: According to the latest data from Care.com, the average hourly rate for a home aide is $20.48. Search for home aide rates in your area here.
Licensed nurses
“For those with more complex medical needs, skilled nursing care provides medical assistance at home, reducing the need for frequent hospital visits while offering a more comfortable and familiar setting,” Burnett says. These professionals can include both registered nurses (RN) and certified nursing assistants (CNA).
Support offered by licensed nurses:
- Assist with ADLs.
- Monitor vital signs.
- External catheter care.
- Minor wound care.
- Lift operation.
- Ventilator operation.
- Administer medications (RN only).
Cost: According to the latest data from Care.com, the average hourly rate for a nursing assistant is $20.63. Search for nursing assistant rates in your area here.
Out-of-home care options for adults with disabilities
For individuals who require more structured, around-the-clock care, out-of-home options may meet their support needs best, according to Burnett. “These settings ensure individuals, especially those with high behavioral needs, receive the necessary care while also fostering social engagement and community involvement,” he says.
Here are the out-home care available for adults with disabilities, including short-term and long-term options, according to experts:
Adult day care programs
Adult day care programs offer daily out-of-home care for adults with disabilities who choose to still live in their homes but require 1:1 support throughout the day. It can also be utilized as a type of respite care for caregivers in need of additional hours to run errands or simply recharge.
Support offered by adult day centers:
- Social activities.
- Transportation to and from your home and the facility each day.
- Meals and snacks.
- Personal care services, including support for ADLs.
- Therapeutic activities such as physical and mental exercise programs.
Cost: In 2023, the national average cost for adult day services was $95 per day, according to data collected by Genworth, a long-term care insurance company.
“Independent living can be really good for people who want just a bit more support and added conveniences to make life easier, but are able to manage on their own.”
— Gerda Maissel, a board-certified physician and founder of My MD Advisor
Independent living communities
Independent living communities are residential communities designed for high-functioning adults with disabilities that offer room, board and other amenities for a monthly fee. “Independent living can be really good for people who want just a bit more support and added conveniences to make life easier, but are able to manage on their own,” Maissel says.
Find independent living near you
Support offered by independent living centers:
- Transportation.
- Meals and group dining experiences.
- Clubs and social activities.
- On-site services, including pharmacies.
- Nurse on staff for support if needed.
Cost: According to experts, most independent living communities require paying upfront fees and a rent between $1,000 to $5,000 per month or more, not including utilities.
Assisted living facilities
According to the National Center for Assisted Living (NCAL), assisted living communities serve individuals who need continuous help with ADLs and some health care services but do not require 24-hour ongoing skilled nursing care services. “If you need help with ADLs or medications, assisted living provides staff that can get you what you need,” Maissel says.
Adult Foster Care (AFC) communities also fall into the category of assisted living as they provide a supportive, home-like environment with 24/7 assistance that encourages independence for adults with disabilities, according to Burnett.
Support offered by assisted living centers:
- 24-hour supervision.
- Meals in a group dining room.
- Personal care services, including support for ADLs.
- Medication management.
- Recreational and spiritual activities.
- Exercise and wellness programs.
- Housekeeping and maintenance.
- Arrangements for transportation.
- Assistance for adults with cognitive disabilities, including dementia.
Cost: The average monthly cost for assisted living is $5,350, according to the latest data collected by Genworth.
Memory care facility
Memory care is a special category of care usually offered within assisted living facilities which offers 24/7 supervision and support for individuals with cognitive impairments, which can include memory loss or confusion due to a traumatic brain injury (TMI) or a dementia related condition.
However, it’s important to note that memory care units are primarily designed for seniors with cognitive diseases who will not return to living within a community, Maissel says, which makes it less ideal for younger adults who suffer a TMI. Choosing a care option that keeps these TMI patients living within their own community is preferred, she says, as recovery is often the goal.
Support offered by memory care units:
- Sensory-friendly environments.
- Intentional internal layout and design to prevent accidents.
- Support with ADLs.
- Increased security to limit wandering.
- Patient-centered care.
Cost: According to Maissel, a private room in a memory care unit could cost as much as $10,000 a month. This is in line with the cost of a private room in a nursing home facility which averages $9,733 per month, according to Genworth.
