Are you seriously worried about your disabled sibling’s future? Here are few tips.                                                                                                                            Roshan Jacob & Soumya Nair

A child perhaps mentally or physically disabled from birth or one who might have suffered an accident earlier in life, grows into adulthood, having been cared for by very loving parents who did everything that could’ve muster is no more and the responsibility falls on the adult siblings. This is such a difficult scenario, yet happens everywhere, every time. For many, deciding who will care for a sister or brother once the parents die or become too frail, is rarely discussed. As social gerontologists we encounter more and more such care concerns in our practice. So we thought it fitting to get a conversation going. We spoke to many, all 50 plus, who will experience all of these but concerns mentioned by us are genuine. Below are some concerns of siblings and we suggest few options.

Let’s start with a letter which we received recently from Sharjah, UAE from Mr. Balagopal. His younger brother aged 54 is deaf, cognitively delayed and OCD.  (A portion is reproduced here with his permission for the purpose of this article.)

“Parents are old but ain't dying or anything, but I'm just thinking ahead. For some reason, this has been bothering me and it is making me so depressed and sad, so I will seek your advice. Also, there is no other immediate family living India other than few distant cousins. All my family in another country are as old as I am or old people.

I'm an able bodied adult, so there isn't really any real reason why I can't take care of sibling in the eyes of the law. I can't get out of it by ignoring sibling and not give him proper care because that amounts to neglect. Can't abandon my brother somewhere, either. I'll be forced to be the legal guardian, otherwise I go to jail. I'll be trapped with no way out of this. At least, that's how I'm imagining all this works, because I don't know anything about this, really.

Presently, I have the freedom to do whatever I want. At present, I am not providing care, so my life is relatively normal. But I live in constant fear that at some point of time I will be full time caregiver to my younger brother and I hate it. Is there a way to seperate myself from my family legally so that I am not obligated to be the guardian? My life won't be mine anymore. Or am I being dramatic, and there's something I can do to get out of this responsibility? I even thought about suicide”. 

Balagopal is definitely going overboard. Being the only, “next to kin”, he has the moral obligation to extend support to his younger brother. Having a sibling with disabilities certainly bring some special responsibilities towards them. No need to shy away from the obligations and he has many options to deliver it without hassling himself.As everyone grows older, eventually both parents die, leaving behind the child with disabilities, now an adult, who has outlived his or her parents is a natural thing and nothing unique to Mr. Balagopal. 

It is very natural that a sibling having concerns about the future for themselves and their brother or sister with disability. What happens when parents are no longer able to provide care? What role should the sibling play how much to get involve? What is the economical involvement and to what extent? Will the spouse adjust and able to share the responsibility of a brother or sister with disability? What about having children themselves? How can a sibling balance the responsibility to their own family and to a brother or sister with disability? These concerns are pertinent, but definitely not to the extent of Mr. Balagopal

In the past children born with disabilities didn’t always live to be adults, or at least didn’t outlive their parents. Decades ago, adult children hadn’t moved to other locations and also had joint family ‘cushioning’. Fast forward to the present times, and this scenario is not at all unusual. In today’s world order, It’s tough managing one’s own ‘core’ family, much less having to worry about sibling with disabilities joining that family, no matter how much siblings love each other, how committed they are, or how thoroughly arrangements had been made by aged parents prior to their own deaths. if living to be an adult and ageing, understand that family circumstances keep changing, medical, financial and caring arrangements should be made with the best interest for all stake holders.

The challenges of the immediate kith and kin are many when it comes to caring a disabled sibling. The challenges include fitting the many new tasks and responsibilities for their sibling into their own life routine. Will the sibling with disabilities move in with the abled one?  How do the sibling with disability’s needs fit into the routine of family life, especially when younger children, the nieces and nephews of the sibling with disabilities, are involved? Who attends the clinical appointments? Or makes medical decisions? How does it funded, especially if Mom and Dad didn’t leave any substantial corpus? Compounding the challenges, now-a-days, it’s a usual thing for the sibling with disabilities to live in one location, while the caregiver sibling lives out-of-state, thousands of miles away.

What’s the legal position?  In general, across the world, Parents are obligated by law to care for their children, and children are obligated to care for their elderly parents, but no law requires siblings to care for each other. When your parents die, a guardian will most likely be appointed for your sibling. You will not be obligated to care for them. Definitely Mr. Balagopal, can relax, because no laws to force a sibling to care for another sibling against their will.  

When the parents become old or very old, find they cannot continue to provide care. It might be time to have a discussion with your parents about long-term care for your sibling, even if he is still living with them now.  While your parents are alive is the best time to consider different options about funds, housing and care. It is better to advocate for a fool proof arrangement regarding the care and finance now than in an emergency when your parents die or are physically unable to care for him. Most of the parents might resist having this discussion, so you better should stand your ground. Emphasize that you are indeed advocating for your sibling for a better life.

As mentioned before, because of result of the medical advances, adults with severs disabilities ca expect to live longer. So it is critically essential to draw up a financial plan that will protect your parent’s retirement and your sibling’s needs after parents are gone. If the sibling is 40 plus years and could expect reach 80, that’s a long period to plan for. Every parent wants to leave behind a little something to ease their children’s way in the world. But for parents of an adult child with disabilities, the estate plan can be crucial in guaranteeing a loved one’s secure financial future.

Financial Planners can help families review their current expenses, assets and income, and make projections far into the future. If the adult child is living at home, they estimate housing costs after the parents die. These professionals may recommend that the parents invest in different portfolios, which would defray some inflation costs if they become ill, to preserve a nest egg for their child’s needs.

You can insist the parents to write a ‘letter of intent’- a road map for other siblings or trustees on how best to care for your disabled child. Ideally, the letter would describe every possible facet of your child’s life, including favorite foods, activities, the relatives and friends he should continue to see and his medical and therapy regimen. 

This is especially true after your parents die or become infirm. Your lawyer will probably set up a Trust’ (‘special needs’), which will protect beneficiary. When they die, they would leave sufficient money in the Trust instead of directly to your child. Instruct relatives or well wishers who wants to help to do the same. Unlike US and European countries, very few parents in India opt for this so called ‘trust’ arrangement. 

Here in India, majority parents forgo a trust, and leave the entire estate to their other children, expecting they will care for their sibling. Is it prudent to believe or trust the other children? Possibilities are that other children could run into financial trouble of their own or may be disinclined to help out. We suggest a scenario in which the other daughter who is providing for her sister could die and money will go into her estate for her husband and her children. This was exactly happened with one of our clients.

An essential part of the planning is to find a suitable housing for your sibling. We encourage parents to move their child out of their home before they start to decline. Moreover, It will be less traumatic for the person with disabilities. When a parent dies, the adult child will be in mourning. On top of that, they are losing their primary caregiver and their home. By finding a suitable housing early, parents can make sure the arrangement is working well and if not make necessary changes.

If this sounds familiar to you, you may be pleased to hear that there are people who can hold your hand through the cumbersome process, and who can help you keep up with all those arrangements, and transitions. In particular, if your loved one with disabilities lives any distance away, it will be imperative you find a trustworthy professional to help you dodge the pitfalls and potholes you may encounter.

With our help, Janet, a widow aged 64, set up a special needs trust for their son, Vinay, as well as zeroed in on a long term care facility. Vinay in his early thirties is quadriplegic due to a spinal injury, as result of bike accident. He’s on an intermittent catheter and needs 24- hour care. At one point of time Janet felt she was fighting a loosing battle because the other son who lives in Australia never came forward for her support. A frustrated Janet then sought professional help. ‘advantAGE told me about the urgency in the matter and I myself got convinced, and I had to find a place for him while I am still here’, says Janet.