Planning for the Future
Enhanced-Care and Planning Rights
When Families Need to Think About What Comes Next
For families of individuals with high support needs, there is a question that lives in the back of every parent's mind: What happens when I can no longer provide care? This page is about that question. It is about the practical steps, the difficult conversations, and the emotional weight of planning for a future you cannot fully control.
Planning is hard. But waiting until a crisis forces decisions is harder.
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Why Planning Matters
Without A Plan:
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Decisions may be made in crisis by people who do not know your child well
Your child may end up in a placement that does not fit their needs
Siblings or other family members may be unprepared for roles they did not expect
Financial resources may not be structured to provide long-term support
Your wishes and your child's preferences are documented and known
Family members understand their roles and responsibilities
Resources are positioned to support your child's needs
Transitions, when they happen, are less traumatic for everyone
With A Plan:
When to Start
There is no perfect time to start planning, but earlier is better.
Some families begin during the transition years (teens and early twenties)
Others start when they notice their own health or capacity changing
Life events like illness, retirement, or a spouse's death often prompt planning
The best time to plan is before you need to. Planning during a calm period gives you time to research options, have conversations, and make thoughtful decisions.
Having Difficult Conversations
Planning for a future that may not include you as primary caregiver is emotionally painful. These conversations are hard for a reason.
With Your Partner
If you have a partner, make sure you are aligned:
• What are your shared hopes for your child's future?
• What happens if one of you dies or becomes incapacitated first?
• What are your respective roles in managing care?
With Siblings and Family Members
Siblings often assume they will take over caregiving, whether or not this has been discussed explicitly.
• Be clear about expectations and avoid assumptions
• Discuss what role, if any, siblings are willing and able to play
• Respect that siblings have their own lives and limits
• Consider the impact on siblings' families, careers, and wellbeing
These conversations can be uncomfortable, but ambiguity creates conflict later.
With Your Child
When possible and appropriate, include your child in planning.
• Their preferences matter
• They may have opinions about where and how they want to live
• Inclusion builds trust and reduces anxiety about the future
For individuals with limited communication, finding ways to understand their preferences is still important, even if it requires creative approaches.
The Letter of Intent
The letter should be detailed enough that a new caregiver could understand your child as a whole person, not just a list of diagnoses and needs.Update it regularly as circumstances change.
A letter of intent is a document that provides detailed information about your child for future caregivers. It is not a legal document, but it is one of the most important things you can create.
A letter of intent typically includes:
Some families begin during the transition years (teens and early twenties)
Personal history and background
Medical information and healthcare providers
Daily routines and preferences
Behavioral considerations and what works
Communication methods
Social connections and relationships
Educational and work history
Religious or cultural considerations
Your hopes and values for their care
Financial Planning for Long-Term Care
Long-term residential care is expensive. Planning for how it will be funded is essential.
Understand the Costs
Residential care costs vary widely based on location, level of support, and type of setting. Costs can range from several thousand dollars per month to significantly more for intensive care. Because these figures change frequently and vary by region, consult current resources and local providers for accurate estimates.
Funding Sources
Medicaid HCBS waivers (often with long waiting lists)
SSI/SSDI benefits
Special needs trusts funded by family
Life insurance policies that fund a trust upon your death
Private pay (either supplementing public funding or as primary source)
Work With Professionals
Estate planning for a disabled family member is complex. Work with an attorney who specializes in special needs planning and a financial advisor who understands disability benefits.
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Practical Steps to Take Now
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Get on your state's developmental disability waiting list as early as possible
Create or update your letter of intent
Establish a special needs trust if you have not already
Review life insurance and consider whether it is sufficient to fund ongoing care
Update your will and beneficiary designations to direct assets to the trust
Have explicit conversations with potential future caregivers
Research residential options even if placement is not imminent
Document your child's needs, preferences, and routines thoroughly
When Placement Becomes Necessary
For some families, there comes a time when home-based care is no longer sustainable. This may happen due to:
• Caregiver aging, illness, or death
• Safety concerns that cannot be managed at home
• The individual's increasing support needs
• Caregiver burnout that threatens everyone's wellbeing
Moving to residential care is not giving up. It is making sure your child has consistent, sustainable support that does not depend on any single person.
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Grief and Acceptance
Planning for a future where you are not the caregiver brings grief. This is true even when the planning is wise and loving.
You may grieve:
• The life you imagined for your child
• The relationship you have as their primary caregiver
• Your own limitations and mortality
• The imperfections of available options
These feelings are normal. Allow yourself to feel them. They do not diminish the love or care behind your planning.
Autism Housing Network (autismhousingnetwork.org)
Directory and resources for housing and residential options.
The Arc: Future Planning Resources
Directory and resources for housing and residential options.
Special Needs Alliance (specialneedsalliance.org)
Find attorneys who specialize in special needs estate planning.
Common Sensory-Friendly Modifications
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A Note to Families
You have spent years caring for your child. Planning for a future without you as primary caregiver is not a betrayal of that care. It is an extension of it.
The goal is not to find a perfect solution. There may not be one. The goal is to make sure your child is known, valued, and supported, no matter what happens.
You are not doing this because you are giving up. You are doing this because you love them.
Planning for the future is one of the most loving things you can do. It is not the end of your care. It is how your care continues.