What’s a life plan? It’s a guide that ensures every essential element is in place for your loved one to live a safe, healthy, fulfilling life.
A good plan can’t avoid all crises, but it can make moving through them easier. When families or guardians of adults with autism and/or intellectual/developmental disabilities (I/DD) contemplate the life unfolding in front of their loved one, that plan can feel daunting. What’s spoken? Unspoken? What should be in writing?
While developing a life plan is critical, it’s not something to rush into or through. It takes foresight. Learning. Revisiting. Updating. And a clear understanding among all parties involved.
The list of considerations is extensive: housing, healthcare, the changing scope of finances, legal needs, life skills, social connections, emotional well-being—and everything else that makes life complex and fulfilling. With sound planning, you can put your loved one on a path to greater independence with the support they need.
Planning reduces uncertainty and increases peace of mind.
The plan you develop today can follow your loved one throughout their lifetime—long after you’re no longer here. It can help answer tough questions in advance, maximize years of independence, ensure long-term security, and organize financial and legal needs. It’s a bridge that gets them over many transitions. It will also help you feel better about what’s around the corner—and around the corner after that. You’re eliminating the guesswork for those entrusted to care for your loved one.
Life Plan Checklist
1. Build independent living skills.
Independence looks different for everyone. The skills required naturally vary from person to person—and sometimes must be refreshed as we age. As you develop your loved one’s plan, think through the skills they will rely on most. Are they proficient or need more work? Are there new skills to explore? Set goals and help your loved one build skills gradually. Let’s consider some fundamentals:
- Personal care: From daily hygiene and getting dressed to sleep schedules and medication management.
- Meal preparation: From grocery shopping to cooking dinner.
- Household responsibilities: From laundry and vacuuming to taking out trash and changing lightbulbs.
- Money management: From earning money to spending and saving it.
- Transportation: From learning bus schedules to using a Waymo app.
- Self-advocacy: From communicating personal needs to scheduling medical appointments.
- Self-regulation: From managing sensory levels to recognizing energy levels.
A purposeful life requires more than skills. It’s important to acknowledge what makes your loved one happy—or unhappy. How do they express emotions? How do they cope with others’ emotions?
As you work through your checklist, create and engage a reliable support network: e.g., a group of friends and/or relatives who can be there for them when they need the extra emotional, intellectual and physical support. That support should begin as soon as you develop your plan.
2. Explore housing options and supportive communities.
One of the most important parts of the plan is determining realistic residential options. What level of independence works best? What’s affordable? What’s a good fit and what’s not?
In a previous blog, we compared independent living with supportive living. Both provide varying levels of autonomy. Full independence means living in one’s own residence—alone or with roommates. Supportive living offers adults a place they can call their own but with amenities, programs and services that provide varying levels of autonomy.
Additional residential community options can meet the spectrum of needs of adults with autism and/or I/DD. Some examples:
- Smaller congregate settings, often called group homes, where a few individuals live with 24-hour supervision and direct care staff.
- Rural or semi-rural properties where residents participate in agricultural activities, vocational tasks and structured community life.
Resources like the Autism Housing Network can also help you locate these and other residential options across the country.
3. Create a long-term financial plan.
Financial stability is essential to a solid foundation for lifelong independence. It can also be a source of anxiety for parents and guardians. When you’re ready to discuss the details, you’ll want qualified professional financial advice. A chartered special needs consultant (ChSNC) is a financial advisor who focuses on the needs of individuals with disabilities and their government benefits, achieving a better life experience (ABLE) accounts and long-term financial well-being.
Items to discuss include:
- Special needs trust. This allows an individual to hold financial assets and receive inheritances or gifts without losing access to government benefits.
- Government benefits. These include various sources of income from Social Security and Medicaid.
- Trustee, financial guardianship or power of attorney. These trusted, designated individuals can help you make sound financial and/or legal decisions.
- Budgeting. It’s an everyday skill that can be honed through routines like automatic payments for recurring bills and visual aids like charts to track income and expenses.
4. Review legal planning and decision-making options.
What happens when an individual with autism and/or I/DD turns 18? Depending on their guardianship status, the law presumes an 18-year-old is fully responsible for their legal choices. Explore formal or less-restrictive legal structures, depending on your loved one’s ability to manage daily life, healthcare and financial responsibilities. Choose the right level of support with respect for their independence preferences and abilities.
5. Plan for healthcare and wellness support.
In addition to organizing records, managing medications and establishing wellness routines, your plan needs to include a path to experienced healthcare professionals who will understand your loved one and administer care appropriately. This may require extra time and work, considering the prevailing lack of focus on adults with autism and/or I/DD in healthcare education and practice. The goal is to ensure a continuum of care—and prevent the “services cliff” that affects so many individuals after they age out of pediatric care.
Consider the following essential healthcare to-dos:
- Find specialized providers. Pre-visits are a must to ensure the right fit.
- Organize vital medical records. Consider a digital medical binder.
- Explore your insurance options. Establish a healthcare proxy, supported decision-making or guardianship details.
- Medication management. Establish strategies to help ensure compliance.
6. Develop social connections and community support.
Social connections have proven to play a critical role in lifelong mental and physical health. As you plan for your loved one’s path into and throughout adulthood, lay the groundwork for opportunities to connect. This can be introductions to clubs, volunteer programs, church or community groups, and a strong network of friends and relatives. Meaningful relationships and activities contribute to overall confidence, pride—and the motivation to stay healthy.
Employment is also an effective pathway to purposeful connections. Employment training can prepare your loved one for finding a job in a positive, neuro-inclusive environment. By discussing job interests, skills and employment goals early, you can help them establish their place in the community while emphasizing that meaningful contribution can take many forms.
Another relationship should be built into your plan. Social connection matters as much for parents and caregivers as for the people they support. Families who have already navigated this journey are among your most valuable resources: they know the questions to ask, the obstacles and the shortcuts. Advocacy organizations, parent networks and professionals who specialize in this field offer the kind of knowledge no checklist can provide. A plan that accounts for your loved one’s well-being but leaves no room for yours cannot be sustained.
Parents can support a successful transition to greater independence.
One of the best ways to prepare your child for adulthood is to step back and give them room to succeed—and fail. By supporting their decision-making instead of making their decisions for them, you can foster confidence and encourage self-advocacy. Look for opportunities to let them plan safe activities, think through problems and manage unexpected situations. Both of you may be surprised by the outcome!
Families face common challenges during the planning process.
As previously noted, planning for tomorrow and beyond can be daunting. What parent is not afraid to let go? The uncertainty around housing, finances and long-term care can be overwhelming. It’s like the hall closet stuffed so full that opening it means risking a cascade of emotions and objects compelling us to urgently shut it with all our might! But you have to open it eventually; and while a few things may fall, you can always pick them up and put them back in their rightful place.
One framework designed to help families open that proverbial closet—and make sense of what’s inside—is Golden Agreements. It offers a structured approach to the conversations that build your lifelong team. What does your loved one need? Who is responsible for what? What happens when life doesn’t follow the plan? It brings families, caregivers and support networks into alignment around those critical questions.
Supportive communities can help.
The social activities, skills-building programs and built-in neighbors that supportive communities like First Place–Phoenix provide can help bridge the gap between family living and independent adulthood. This type of living environment can also serve to connect residents to the surrounding community, creating a greater sense of belonging.
Final thought: A plan today can help avoid a crisis tomorrow.
Are you feeling a sense of urgency? That’s understandable—but try to avoid acting out of haste. Take small, intentional steps with the plan to help you manage emotions, think with clarity and check all the boxes.
Adulthood is coming—if it’s not already here. A sound, intentional life plan, especially when started sooner than later, can help your loved one successfully grow into it—and live the kind of life we all envision for our children.
Free Webinar: Beyond the Will
First Place Global is hosting an informative 90-minute webinar to help you plan for your loved one with autism and/or I/DD. Join us to learn how legal, financial, family and housing plans can combine to help create greater clarity, reduce potential future conflict and support a meaningful life. Register before Tuesday, August 18.