title: Living with an adult with Down syndrome at home: organization and family balance
description: Practical guide to organizing daily life with an adult with Down syndrome at home: task distribution, autonomy, social life, family balance, rights and assistance to maintain harmony and well-being for all.
keywords: adult with Down syndrome home, living with adult with Down syndrome, family organization Down syndrome, autonomy adult with Down syndrome, family balance disability, cohabitation adult with Down syndrome
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Down syndrome, adult, home life, family organization, autonomy, balance, cohabitation
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Reading time: 19 minutes
"My son is 30 years old and still lives at home." "How to organize daily life so that he is autonomous?" "My couple life suffers, we are always focused on our daughter." "Is it normal for him to live with us at this age?" "How to find the balance between helping him and living my own life?"
Many adults with Down syndrome live with their parents - by choice, due to lack of alternatives, for safety. This situation can be a source of fulfillment for everyone if well organized, but also of tensions, exhaustion, and family imbalance if it is endured.
How to organize daily life? How to promote the autonomy of the adult with Down syndrome while preserving couple life, family life? How not to forget oneself? How to anticipate the future?
This guide helps you create a harmonious balance to live peacefully with an adult with Down syndrome at home.
Table of contents
1. Living together: choice or constraint?
Living together: choice or constraint? {#choix-ou-contrainte}
The different situations
Mutual choice:
The adult with Down syndrome and the parents wish to live together. Harmonious, enriching relationship.
By default:
Lack of places in group homes, independent housing financially or cognitively inaccessible.
Temporary:
While waiting for an appropriate housing solution.
Permanently:
Family choice to keep the adult at home for life.
There is no "good" or "bad" solution
Every family is unique.
What matters:
- The well-being of the adult with Down syndrome
- The well-being of the parents
- The overall family balance
If cohabitation is serene, fulfilling: That's perfect.
If it causes suffering, exhaustion: Alternatives or adjustments need to be sought.
Legitimacy of questions
It is normal to ask:
"Is it good for him/her?"
"Is it good for us?"
"Until when?"
No guilt in wanting an autonomous life, separate housing for your adult child.
It's not abandonment, it's allowing everyone to thrive.
Promoting the autonomy of the adult {#autonomie}
The adult with Down syndrome ≠ eternal child
Common mistake: Treating them like a child even at 30, 40 years old.
Consequence: Infantilization, loss of autonomy, frustration.
Principle: Even with a disability, they are an adult. Respect their status.
Promoting daily autonomy
Personal hygiene:
Household chores:
Active participation rather than being a passive spectator.
Cooking:
Managing their free time:
Autonomy in mobility
If abilities allow:
If not:
Independent social life
The adult needs a social life outside the family.
Promote:
Accompany without suffocating.
Intimacy and emotional life
Respect intimacy: knock before entering their room.
Emotional life: If in a romantic relationship, respect it (see dedicated article).
Do not deny the adult dimension of the person.
Daily organization {#organisation}
Task distribution
Involve the adult with Down syndrome in household chores.
Task chart (displayed, with pictograms):
Everyone contributes according to their abilities.
Value contributions: "Thank you for setting the table, that's great!"
Clear routines
Adults with Down syndrome function well with routines.
Establish schedules (waking up, meals, bedtime, activities).
Weekly visual planning displayed.
Predictability = safety = less anxiety.
Personal spaces
The adult must have their own space: their room.
Personalized according to their tastes (posters, colors, organization).
Respect this space (do not rummage, knock before entering).
Parents also need their own spaces (bedroom, living room in the evening).
Define: "After 10 PM, it's quiet time, everyone in their space."
Meals
Sharing meals = convivial moment.
But also: Sometimes let the adult eat alone (autonomy).
Involve in preparation, shopping.
Financial management
If the adult receives AAH (their money):
Give them a share of management:
Learn to manage (with support):
Avoid: Controlling everything, deciding everything for them.
Preserving family balance {#equilibre}
Not forgetting oneself
Risk: Life centered 100% on the adult with Down syndrome.
Consequences:
Solutions:
1. Couple time
Outings for two (without the adult with Down syndrome):
Intimate moments: separate bedroom, lock on the door.
2. Personal time
Each parent has the right to their own activities:
Rejuvenate = be available afterwards.
3. Balanced distribution
Do not place everything on one parent (often the mother).
Share the support, the tasks.
Preserving sibling relationships
If siblings still live at home:
Be careful not to neglect them.
Special moments with each child (without the adult with Down syndrome).
Involve without overloading: help, but do not become the second parent.
Parents' social life
Do not isolate because of the adult with Down syndrome.
Continue to see friends, to have a social life.
Invite to the house: normality, conviviality.
Some friends will not understand: OK, surround yourself with kind people.
Support groups
Support groups for parents of adults with disabilities.
Share experiences, advice, mutual support.
Associations (Trisomy 21 France, Unapei) organize meetings.
Respite services
Temporary accommodation in a group home (a few days, weeks):
Day care (during the day):
Home care assistant (a few hours/week):
Inquire with the MDPH, the associations.
Funding: PCH (Disability Compensation Benefit), respite assistance.
Anticipating the future {#anticiper}
What will happen when we are no longer here?
Anxiety-inducing question, but essential.
Solutions to anticipate:
1. Independent housing or group home
Prepare for the transition now (see dedicated article on independent housing).
Register on waiting lists (group homes, inclusive housing).
Familiarize the adult with the idea (visits, temporary stays).
2. Guardianship / Curatorship
If the adult cannot manage their affairs alone:
Legal protection measure:
Designate a guardian:
Anticipate: Discuss with siblings, choose together.
Procedure: Judicial court (guardianship judge).
3. Will, inheritance
Plan the inheritance to protect the adult with Down syndrome.
Consult with a notary: legacies, donations, life insurance.
Ensure that the adult will have resources, housing.
4. Support network
Create a network around the adult:
The larger the network, the more the adult will be surrounded after the parents' death.
Discuss with the adult with Down syndrome
According to understanding abilities:
Explain simply: "One day, mom and dad will be very old, we won't be here anymore. But you won't be alone. [Guardian's name] will take care of you. You will live [planned location]. You will always have your friends, your family."
Reassure.
Prepare gradually (visits, stays) so that it is not a shock.
Rights and assistance
AAH (Disabled Adult Allowance)
Max amount (2025): ~€1,000/month.
Allows a financial contribution to the household.
PCH (Disability Compensation Benefit)
Can finance:
Application: MDPH.
Housing assistance
If the adult lives with parents:
APL possible depending on household income.
Support services
SAVS / SAMSAH: Home support (see dedicated article).
Conclusion: Balance and anticipation
Living with an adult with Down syndrome at home can be a rewarding experience, a source of joy and closeness. But it requires organization, respect for everyone's autonomy, preservation of family balance, and anticipation of the future.
The keys to harmonious cohabitation:
1. Promote the autonomy of the adult (tasks, social life)
2. Respect their status as an adult (intimacy, choices)
3. Organize daily life (routines, task distribution)
4. Preserve family balance (couple, personal, social time)
5. Anticipate the future (housing, guardianship, support network)
6. Utilize available assistance (respite services, PCH)
Living together is possible. Living well together is a daily task. But with organization, kindness, and anticipation, harmony is within reach.
DYNSEO resources to support autonomy:
Living together is a delicate balance. With organization, respect, and love, this balance becomes harmony.