Questions and Answers About Your Child's Future

1. "My husband and I plan to leave our apartment to our handicapped son. Couldn't he live there after we're gone with someone to care for him?"
In theory, yes—and many parents dream of this. But it raises real questions. Who is this caregiver? Will they truly commit every hour—nights, weekends, holidays—to his care? How can you be sure this is what your son actually wants? And if it works initially, who steps in when that person can no longer help? You'll need to establish a trusted family member or close friend to oversee his wellbeing: the finances, his daily life, and his safety. This person must have your absolute confidence.

2. "We'd like to leave our apartment so our son can stay in his neighborhood, living with a few other young adults with similar disabilities."
A small group home requires one crucial thing: someone to fill the parent role. Rotating social workers, yes—but coordinated by one trusted, capable person. This can work, but only if that coordinator is formally appointed by a trusted organization responsible for the home's operation, finances, and the residents' welfare. Know this: the cost is steep. Those who've tried it report expenses far higher than expected.

3. "Right now my son gets in-home care for a few hours on certain days. Could the same workers extend that to round-the-clock care?"
Twenty-four hours a day, every day, including holidays. Who ensures this continues? Who oversees his care? Who protects his quality of life, his medical needs? The payroll alone for multiple workers—and you'd need several to cover all shifts—becomes astronomical and bears no relation to the actual service. Beyond the money: is this really what your son needs? Passing from hand to hand, without fixed relationships or stable figures who know him, love him, and give him security?

4. "After all these years at home with us, how will he manage the transition? How will he adjust to a new place, new people?"
Don't wait. Start early. Just as you would with any child, help him attend a day program, a workshop, a youth group—places where he spends time and develops a life beyond home. He needs to be around people other than his parents, in settings where you're not present. The initial separation is hard for some. Very hard. But it's essential—especially for those with greater disabilities—to prevent the terrible trauma that comes when the separation happens suddenly, in crisis, with no preparation.

5. "My son has a mild disability. It doesn't seem right that he should live with people more disabled than he is."
This worry is human, but it belongs more to parents than to young adults. Underneath it lies fear: will he decline if surrounded by those with greater needs? Possibly, in some cases, especially in childhood. But our experience, the situations we've known, and expert opinion confirm this: adults with disabilities can live without trauma in small groups with people more affected than themselves—provided the environment is calm, upbeat, dynamic; provided they're listened to, and taught compassion and tenderness for those with greater struggles. Many find in this role a way to build identity, to feel important and capable of genuine help. This grows them. It strengthens them.

6. "How do we find other parents ready to plan our children's future alongside us?"
This question deserves a full chapter. We'll offer a few signposts instead.

1. If your son attends a school, day program, or workshop, he's surrounded by other young people in similar situations. Get to know their parents. Meet. See if you share concerns. Can you talk openly? Can you build something together? Consider:
   
   
   
   1. Speak with the educators. Ask their views. Ask for their help.
   
   
   2. Suggest a weekend together—parents, young adults, a few staff, friends.
   
   
   3. Propose a week or more of shared vacation.
   
   
   
   If the group gels, and especially if the parents begin to trust each other, you can start laying the groundwork.
   


2. Write to an organization whose mission includes residential communities. Ask if they can connect you with other parents and support your plan.


3. A parent group doesn't need to be large. Two or three couples, well-matched and committed, are enough. Others will join. With luck, your group will grow to include young adults with serious disabilities who lack parents or whose families face hardship. Working for others beyond yourselves gives everyone energy.


4. If you live in a small town or far from the city, speak to your local social services. Ask persistently. Demand their help in preparing your son's future, whether through existing services or organizations in nearby areas.


5. If you belong to a parents' association—ANFFAS, AIAS, UFHA, or others—bring this urgency to them. Offer your time, your resources, your skills. Push for residential communities to be built.

- Editors, 1991