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What to Consider When Your Young Adult Lives at Home With You or Lives With a Family Member?

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Transitioning to adulthood can be challenging for any family—but for families of individuals with intellectual and developmental disabilities (IDD), it often comes with added concerns about safety, support, and long-term care.

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Many parents worry about what will happen when they’re no longer able to provide care. Who will support their loved one? Where will they live? Will they be safe and have a good quality of life?

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There’s a common misconception that services and waivers only support adults with IDD to live with their parents indefinitely. While some families choose this, others have no alternative due to limited housing or support options after school ends.

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Like all young adults, many people with IDD want to explore independence—but they may need additional support to do so. Without a plan in place, a sudden crisis can lead to disruptive moves away from familiar people and places, causing distress and difficulty adjusting.

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Every person is unique. With the right supports and planning, individuals with IDD can thrive in safe, meaningful, and inclusive living environments.

 

​Key Considerations: Pros and Cons of Living with a Parent or Family Member

Pros:

  1. Familiarity and Stability:

    • The home environment is familiar, which reduces stress.

    • Strong emotional bonds and trust already exist.

  2. Customized, Attentive Care:

    • Parents and family know the adult’s needs, habits, and triggers.

    • Often leads to high-quality, consistent, and loving care.

  3. Lower Cost (sometimes):

    • May reduce the financial burden compared to residential or group homes.

  4. Caregiver has More Control:

    • You can coordinate services and choose staff to work with rather than it being assigned.

  5. Potential Safety and Health Monitoring:

    • Close oversight can catch medical or behavioral issues early.

Cons:

  1. Loss of Independence:

    • Living at home may limit the adult's opportunities to build skills, social networks, or live with some autonomy. Caregivers might not have the capacity to consistently teach life skills.

  2. Isolation:

    • Being at home can cut off access to peers, broader community life, employment, and recreational programs. Depending on how the caregiver coordinates services and staff availablity, it can be the most community inclusive situation or the most restrictive.

  3. Emotional and Physical Strain on Caregiver:

    • Caregiver burnout is common.

    • Caregivers may neglect their own health, career, or social lives.

  4. Lack of Emergency Planning:

    • If the caregiver becomes ill, incapacitated, or dies suddenly, the adult may face a traumatic transition with no familiar plan in place.

  5. Unclear Future Planning:

    • Living with family can delay or prevent future housing, legal guardianship, or benefits planning—causing a crisis later.

 

Developmental and Social Impact on the Adult with ID

  • Skills Building: Adults who live more independently often develop life skills, social awareness, and confidence that aren’t always nurtured in a home setting.

  • Social Integration: Community living promotes relationships with peers, mentors, and service providers.

  • Agency: Having a structured, individualized plan outside the family can improve self-determination and emotional growth.

  • Risks: Some individuals may face more anxiety or behavioral challenges when removed from family care, especially if the transition is abrupt or not well supported.

 

Risks to the Caregiver

  • Physical demands of caregiving increase with age.

  • Increased risk of depression, isolation, chronic stress.

  • Financial strain (especially if they reduce work hours or retire early).

  • Health decline may go unnoticed due to focus on caregiving duties.

 

What Happens If the Caregiver Gets Sick or Dies?

This is a crucial issue. Without a clear plan:

  • Your loved one may be placed in emergency residential services with no preparation.

  • They may be relocated far from familiar environments or people and assigned to a place that may not be a good fit for them.

  • It's emotionally traumatic and confusing especially when the person with IDD is older (30+) and can't adjust as quickly.

  • If they haven't been registered with the county through FSS funding or waivers, they run the risk of homelessness without a solid plan.

 

Planning for the Future: Steps to Consider

1. Person-Centered Planning

  • Create a long-term care plan that centers on your child’s goals, strengths, and preferences.

  • Involve them as much as possible in decisions.

2. Legal and Financial Planning

  • Establish guardianship or supported decision-making, if needed.

  • Set up a Special Needs Trust or ABLE account to preserve benefits.

  • Consider writing a Letter of Intent detailing your child’s needs, preferences, routines, and contacts.

3. Housing Planning

Explore these long-term housing options:

  • Group homes or supported living arrangements.

  • Lifesharing

  • Supervised independent living.

  • Family-supported living with backup plans (be sure that family is willing to house your loved one.

4. Waiver Services

  • Medicaid Waiver programs provide funding for in-home and community-based supports.

  • Yes—you can often change or adapt the waiver to fit a new living situation if your adult child can no longer live with you. County will take over in emergency situations but this can be very confusing and stressful to someone who may not understand what happened and has to adjust to a new place.

⚠️ Important: Waiver changes require reassessment and can involve long wait times. Start planning early.

 

Transition Planning: How It Works

If your adult child currently lives with you but may need to move to supported housing later, here’s how the transition often goes:

  1. Contact your local developmental disability services office to inform them you are planning a change in living arrangements.

  2. Update the person’s Individualized Service Plan (ISP) with their new needs and preferences.

  3. Reassess for eligibility and level of need, which may shift if they’re no longer in a family home.

  4. Identify potential residential options. Visit and trial them if possible.

  5. Arrange funding through waiver services or other programs.

  6. Build a transition timeline that allows for gradual adjustment: short visits, overnights, then full move.

  7. Maintain continuity (same support staff, routines, etc.) wherever possible.

 

Final Thoughts

Keeping your adult child with you out of love is completely valid—but only when paired with realistic, long-term planning. You are not failing them by preparing them (and yourself) for a future where you're no longer there.

The best outcomes often come from combining love and planning:

  • Keep them close while working on skill-building.

  • Start gradually integrating them into programs, work, or housing that can eventually take over when you're gone.

  • Make sure others know what your child needs and how to provide care in your absence.

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