“It is the biggest fear for every parent in this situation: What is going to happen when I’m gone?”
Thinking about who will care for a family member with an intellectual or developmental disability after parents die is difficult. However, you can help everyone by planning wisely and early.
Sacramento Magazine’s recent article, “When the Caregiver Dies,” reports that millions of parents of children with an intellectual or developmental disability (“I/DD”) must address the real likelihood their children will outlive them and that the responsibility of caring for the child will eventually fall to another. Across the country, there are more than 880,000 people with I/DD who live with a family caregiver over the age of 60, according to The Arc, an advocacy organization for people with I/DD.
Personal safety is a primary concern of these parents because those with disabilities are disproportionately vulnerable to violence. The U.S. Department of Justice says the age-adjusted rate of violent crime against people with disabilities is almost triple that of people without disabilities, and among individuals with disabilities, those with cognitive disabilities experience the highest rate of violent victimization.
There are also other vulnerabilities. Some individuals with I/DD may place trust in people who want to take advantage of them. There are also practical considerations surrounding the loss of a trusted caregiver. A parent who’s intimately involved in daily caregiving is acutely aware of all of the details that make a day run more smoothly. This includes the person’s likes and dislikes, things that can trigger negative behavior, and how to help him or her after an unpleasant experience. It’s very hard to replace a caregiver who has that kind of deeply personal knowledge.
You can increase the odds of a good quality of life and happiness by advocating and planning for your child as soon as possible.
Devising a care plan for someone whose disability prevents them from living independently may involve having a sibling or another close family member assume the caregiving responsibilities in the parents’ home after the parents die. If that’s not an option, families may consider a non-family caregiver, a group home or another place that satisfies the particular needs of the individual.
Regardless of their living arrangements, families of children with I/DD must usually deal with many years of expensive care. One way to plan for a child’s financial future is by creating a special needs trust, which serves as a receptacle for assets intended for the child with a disability. The assets in a special needs trust are generally used to pay costs that government benefit programs don’t cover. By leaving assets to the trust, a person with special needs can still qualify for government benefits. Families can fund a special needs trust by starting early with savings or investments. Buying a life insurance policy with the special needs trust as the recipient of the proceeds is also a good start.
Make sure that you use an attorney with considerable experience setting up special needs trusts, since some estate planners who are not well-versed in disability benefits may not set up the trust correctly and not adequately serve the needs of the child.
A letter of intent, typically written by one or both parents, provides practical guidance about the person’s daily needs, special interests and personal wishes. A letter of intent is very important. Parents should keep a diary for a month about everything they did on a daily basis to care for the child, then translate that into a letter and review it every year. The letter should detail things like the person’s daily schedule and medical history, religious preferences and favorite foods. This is a good way to help current and future caregivers be aware of the needs of the whole person, rather than just their housing or medical needs.
Parents who have a child with a brain-based diagnosis should know, as early as possible in that child’s life, how they operate, their strengths and weaknesses, their likes and dislikes and their desires.
Reference: Sacramento Magazine (November 14, 2016) “When the Caregiver Dies”
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