If you are in your mid to late 50s or older and have an intellectually disabled adult child living at home, you are part of the first generation whose disabled kids may well outlive them. Advances in neonatal medicine saved your baby’s life. Advances in medical care have made it possible for your child to have a normal or close to normal lifespan. You refused your well-meaning doctor’s advice to institutionalize your intellectually disabled kid in the 1940s, ’50s, or ’60s. You have loved and cared for him (or her) and you’ve done your best to raise him, protect him, and include him fully in family life for 30 to 60+ years.
Maybe you are beginning to feel your age. Maybe your health and strength are failing. Your child has been the center of your life for decades and depends on you to be the buffer between him and the world. One day you wake up and realize you are faced with a new and frightening dilemma: Who will provide the same love and care when you are too old or frail or sick to manage or when you are gone? It’s a familiar worry for every parent of an adult child with intellectual disabilities.
It’s time. You have given your child the gift of a loving family life well into adulthood. Now it’s time to give that child, and you, the security that comes with having some idea of what the future will bring. You don’t have a choice about eventually dying. You do have at least some choices about how to best provide care for the adult child left behind.
You are not alone if you find this enormously difficult even to think about. Your life has been entangled with your child’s for so long that it’s hard to sort out whose needs are whose. Maybe it breaks your heart to think about how difficult it will be for your child to adapt to a new situation. Maybe you worry whether any program can provide enough protection or can see to your child’s complicated medical and emotional needs. Then again, maybe you don’t want your child to move out because you will lose each other’s company or you have so centered your life around your child’s needs that it’s hard to imagine what you will do next if he or she leaves home. Or, like many parents, you are so overwhelmed by the thought of dealing with the bureaucracy called human services you are finding it hard to get up the energy to put plans in motion.
Nonetheless, your job as a parent isn’t over. Without a plan, your child could be emotionally traumatized by losing everything at once (parent, home, and all that is familiar) if you suddenly become disabled or die. Loving your child now means beginning the process of letting go. Your child needs your support in transitioning to whatever will come next. You need the peace of mind, and the relief, that can come with knowing that your child will be safe and cared for.
Planning for the future is a lengthy process. Fortunately, lots of people have already paved the way so you don’t need to figure it all out for yourself. You’ve met countless challenges to bring your child this far. With the support of family and other parents and with some good professional help, you can meet this one too:
Here are some of the things you will need to do or think about:
- Contact the local agency that oversees services for the intellectually disabled. Often there are case managers who can help you learn what is possible. Different states and communities have different services and different residential options. You can’t make choices unless you know what the choices are. Case managers also often are able to refer you to parent support groups, family therapists, or other professionals who can help you (and your child) understand and manage the challenges of this stage of life.
- Don’t just assume that siblings or other relatives will provide care. Out of love and concern for their parents and sibling, it is not unusual for brothers and especially sisters to make promises they really can’t keep. Promises based on guilt or protection of another’s feelings usually backfire. Have a family meeting to talk honestly about what people realistically can and can’t do. It may be disappointing to find that no family members can guarantee that they will take your child in. But it’s better to know so that you can work together to find alternatives.
- It is very, very expensive to replace you. Maintaining and staffing a residential program probably costs more than you think. Before you consider creating your own program for your child, make sure that you have a realistic understanding of just how much money it will take and what is involved in managing it.
- Don’t assume that putting money in a trust or willing the house to your child will take care of the problem. Estate laws vary from state to state. So do the rules and regulations for government benefits. (Sometimes having money or property in his or her name will mean that your child is ineligible.) It’s not a good idea to go it alone. Work with an attorney and accountant to protect your child over the distant future.
- Plan early. Wait-lists for residential placement often are very long. Even if you think you won’t need some kind of residential option for your child for another 10 years, it is generally a good idea to make yourself known to your local service system so they can include your child in long-term planning.
- Continue to work on increasing your child’s independence to whatever extent is possible. In this sense, an adult child with intellectual disabilities is no different from any other child who is getting ready to leave home. It may be easier, for example, to do his laundry. But if he is capable of learning how to do it on his own, he will develop more self-confidence and he will be easier to place.
- If your adult child’s world is limited to the family, do what you can to help him get used to other people, including peers. When people are comfortable around others, they are less upset when they must move to a new living situation. If you haven’t already, find out if there is a Special Olympics program, a Best Buddies group, or a local social club for people with intellectual disabilities and help your child get involved.
- Plan for yourself. Your child isn’t the only one who will experience a drastic change when he or she leaves home. What will you do to fill the big hole left behind when your child leaves? Are there projects you’ve been putting off? Places you’d like to see? People you’d like to get to know? You may be rusty at being social or doing things you once enjoyed. There’s no shame in asking for some support to help you venture back out into the world. Consider seeing a therapist if you find it hard to manage your feelings.
You’ve supported your child, cared for your child, advocated for your child, and loved your child into adulthood. You’re probably exhausted. You may be scared. Taking the next step is a lot to think about. But worrying about the future won’t help you or your child. Embracing the challenge of planning for the future will.