When you start to think about the future for adults with Down syndrome, there’s one question that always seems to hang in the air: What happens when their caregivers are gone?
It’s a question that’s tough to answer because, honestly, no one knows exactly what the future holds. But we can control some things.
We can plan for what we can control and ensure that those with Down syndrome have a life that is as fulfilling, independent, and supported as possible—even when the safety net of caregiving is no longer there.
The key to all of this? Starting early. The sooner caregivers begin planning for the future of their loved ones with Down syndrome, the better the chance they have to live a life that’s not just comfortable but full of opportunity.
A Conversation About Caregiving and the Future
Caregivers—whether it’s parents, siblings, or close family friends—are absolutely essential for the well-being of adults with Down syndrome.
They’re the ones making sure that daily routines run smoothly, that medications are taken, that doctor’s appointments are kept, and that emotional support is provided when needed.
In short, caregivers act as the safety net for adults with Down syndrome, helping them to thrive in ways that might be difficult to achieve alone.
Caregivers don’t last forever. Whether due to aging, illness, or other reasons, eventually, caregivers won’t be around. And this raises the question: What happens next?
Planning Early
If there’s one piece of advice I can give, it’s this: start planning NOW. The earlier the planning process begins, the more options and control you have over the future. Procrastination in this area is dangerous because it often means scrambling to figure things out when it’s too late.
And planning isn’t just about the paperwork—it’s about setting up systems and structures that will provide support long after the caregiver has passed on.
Legal Planning
One of the most important parts of planning for the future of adults with Down syndrome is legal planning. If you’re a caregiver or a family member, you need to have a legal structure in place to make sure the adult with Down syndrome is well taken care of once you’re gone.
Guardianship
It’s an uncomfortable topic to bring up, but it’s vital. Who’s going to step into the shoes of a caregiver when the original caregiver is no longer able to provide care?
In the United States, when a parent or caregiver passes away, the person with Down syndrome often needs a legal guardian. This person will make decisions on behalf of the adult with Down syndrome about things like medical care, finances, and living arrangements.
Selecting the right guardian is an emotional decision. You want someone who understands your loved one’s needs but is also capable of managing the practicalities that come with caregiving.
What do you look for in a guardian?
- Experience with caregiving: You want someone who already has some experience in caring for individuals with special needs. It might not need to be professional experience, but they should be familiar with the routine and the challenges.
- Compatibility: The guardian should be someone who genuinely enjoys being with the adult with Down syndrome. This isn’t a job someone should take on out of obligation. They need to have the emotional and mental bandwidth to handle the role.
- Practicality: Can they handle the day-to-day responsibilities? Can they budget, keep track of medical needs, and make decisions in a crisis?
It’s a lot of responsibility, and it’s important to have a conversation with the potential guardians before making this decision.
Power of Attorney and Health Care Directives
Caregivers should establish a power of attorney and healthcare directives. This is especially important if the adult with Down syndrome is capable of making some decisions for themselves but may need help with others as they age.
A Power of Attorney (POA) allows someone to make decisions on behalf of the adult with Down syndrome when they are unable to do so themselves. There are two types:
- Durable Power of Attorney: This allows someone to make financial decisions on behalf of the individual.
- Health Care Power of Attorney: This allows someone to make medical decisions if the person can no longer do so.
These documents are essential for ensuring that the adult with Down syndrome’s health, finances, and well-being are managed properly if they can no longer manage them independently.
Financial Planning
When caregivers are gone, the financial situation of adults with Down syndrome can become precarious. It’s important to plan for long-term financial stability.
This is often where families get stuck—thinking about the future of their loved one financially can feel overwhelming, but it’s crucial to do so.
Special Needs Trust
One of the best ways to ensure that the adult with Down syndrome is financially supported is through a Special Needs Trust (SNT).
A Special Needs Trust is an irrevocable trust designed to provide financial support without disqualifying the person from public benefits, like Medicaid and Supplemental Security Income (SSI).
Without this type of trust, if the adult receives an inheritance or gift, they could lose their eligibility for government assistance.
An SNT is controlled by a trustee, and it allows funds to be used for a variety of things, including:
- Medical expenses not covered by insurance
- Education and vocational training
- Personal care services
- Entertainment and recreation
Setting up an SNT takes some paperwork and legal work, but it’s an investment that guarantees your loved one will be financially secure long after you’re gone.
Life Insurance
Another financial tool that can be helpful is life insurance. Purchasing a life insurance policy now can provide the adult with Down syndrome a financial cushion for the future.
The payout from a life insurance policy can be placed in a Special Needs Trust or used to cover future costs like caregiving or medical expenses.
When selecting life insurance, make sure to consult with a financial advisor who has experience working with special needs families.
They’ll help you choose the best policy and understand the complexities of managing it in the context of special needs planning.
Housing Options
Housing is another major consideration. When a caregiver is no longer around, where will the adult with Down syndrome live?
There are several options to consider, and choosing the right one will depend on the individual’s needs, preferences, and abilities.
Supported Living
One option is supported living, which allows adults with Down syndrome to live independently with regular visits or check-ins from caregivers or support staff.
They can live in their own apartment or home, but they have access to a network of support that includes people who help with things like cleaning, meal prep, transportation, and medical needs.
Supported living is ideal for individuals who are capable of some level of independence but need guidance and supervision.
Group Homes
Group homes are another viable option for many adults with Down syndrome. Group homes allow individuals to live in a small community with others who have similar needs.
These homes are staffed by trained professionals who provide 24/7 care, ensuring that the adult with Down syndrome has all of their needs met.
While group homes offer a lot of structure, they can be less personalized than supported living. However, for many adults with Down syndrome, group homes provide the right balance of independence and support.
Family Care Homes
In some cases, family care homes are another option. These homes allow adults with Down syndrome to live with families who are specially trained to care for them.
Family care homes provide a more homelike environment than group homes, and they offer more individualized care.
This option may work well for those who thrive in smaller, more intimate settings and are not ready for full independence.
Employment
A big part of planning for the future is considering how adults with Down syndrome will spend their days—especially if they’re capable of working.
Employment offers more than just financial independence; it can also provide structure, social interaction, and a sense of accomplishment.
Many adults with Down syndrome work in jobs such as:
- Retail: Greeting customers or stocking shelves.
- Food Service: Helping with prep work, serving food, or cleaning tables.
- Office Jobs: Filing, organizing paperwork, or answering phones.
- Arts and Crafts: Making jewelry or painting to sell.
To help adults with Down syndrome enter the workforce, consider vocational training programs, job coaching, and partnerships with local businesses that are open to hiring adults with developmental disabilities.
Employment may not be the same for everyone with Down syndrome, but every effort to find a meaningful job is a step in the right direction.
Building a Support System
Finally, let’s talk about building a support system. When you’re no longer there to provide care, the best thing you can do is ensure that your loved one has a strong network of people who will step in and help.
That support system includes family, friends, professionals, and the community. It’s important to create a group of people who can work together to meet your loved one’s physical, emotional, and social needs. This network can include:
- Family members
- Close friends
- Neighbors
- Community organizations or support groups
- Caregivers or professionals
Having this support system in place is essential for the adult with Down syndrome to thrive long after the caregiver has gone.
Conclusion:
Planning for the future of an adult with Down syndrome when the caregiver is gone may feel overwhelming, but it doesn’t have to be scary. The key is to plan early, create a network of support, and make sure financial, housing, and medical needs are taken care of.
By being proactive, we can ensure that adults with Down syndrome continue to live fulfilling, happy, and independent lives. The future doesn’t have to be unknown or uncertain. With the right tools and resources, it can be full of opportunities, connections, and happiness.
And remember—don’t wait too long to get started. The more you plan now, the better the future will be for everyone.
