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How Do Muslims Plan for Disability

Families with children with disability have an extraordinary set of challenges and blessings.  Disability (or special needs) is a broad term.

Many disabilities will prevent what we often think of as “normal.”  It may hinder or prevent educational opportunities, and employment. Many people with “special needs” can get educated, get married and live long and productive lives.  The problem for many parents of younger children with special needs is that they typically have no certainty about their children’s future needs. Even if the situation looks dire, it may not stay that way.

How do parents plan for a world where they may not be around to see how things will end up for their special needs children?  What can they do to help their children in a way that does not violate Islamic Inheritance rules?

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Certain types of disability, especially the loss of executive decision-making ability, could also happen well into adulthood.  This can be a threat to a family’s wealth and be the cause of internal conflicts. This is the kind of thing every adult needs to think about before it happens.

The Problem

The issues are not just that parents believe their special needs child will need more inheritance than other children. Muslim parents usually don’t think that. Some parents don’t want their special needs child to get any inheritance at all.  Not because of any ill-will against their special needs child; just the opposite, but because they are afraid inheritance will result in sabotaging their child’s needs-based government benefits.

Many, perhaps most special needs children do not have any use for needs-based benefits (benefits for the poor).  But many do, or many parents might figure that it is a distinct possibility. This article is a brief explanation of some of the options available for parents of special needs children.  It won’t go over every option, but rather those that are usually incorporated as part of any Islamic Estate Planning.

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Example:  Salma has three daughters and two sons.  One of her children, Khalida, 3, has Down Syndrome.  At this point, Salma knows that raising Khalida is going to be an immense challenge for herself, her husband Rashid and all the older siblings.  What she does not know, however, is what specific care Khalida is going to need through her life or how her disability will continue to be relevant. She does not know a lot about Khalida’s future marriage prospects, ability to be employed and be independent, though obviously like any parent she has nothing but positive hopes for her child’s life.

In the event of her death, Salma wants to make sure her daughter gets her Islamic right to inheritance.  However, if Khalida needs public benefits, Salma does not want her daughter disqualified because she has her own money.

Her solution is something called a “stand-by special needs trust.” This type of trust is done in conjunction with an Islamic Inheritance Plan and is typically part of a living trust, though it could also be a trust drafted into the last will.  I will describe more about what a special needs trust is below. For Salma, she is the Trustee of her trust. After she dies, she names her husband (or someone else) the successor Trustee. The trust is drafted to prevent it from becoming an “available resource” used to determine eligibility for public benefits such as Supplemental Security Income (SSI), Medicaid and other benefits that go with that.

If it turns out that Salma passes away when Khalida is 5, and her assets are held in trust for her until she is 18 and her Trustee determines she does not need a special needs trust, she will get her inheritance precisely like everyone else based on their Islamic right.  If she does need benefits, the Trustee will only make distributions to Khalida that would not harm her eligibility.

This way, there is no need to deny Khalida her inheritance because of her disability, and she is also making sure giving her daughter inheritance would not harm her daughter’s healthcare or other necessary support.

Munir Vohra is a special needs advocate and an athlete

The Shape of Special Needs Trusts

A stand-alone Special needs trusts, which is sometimes called a “supplemental needs trust” the kind without the “stand-by” variation I described above, are a standard device for families that have children with special needs. A trust is a property ownership device. A Grantor gives the property to a Trustee, who manages the property for the benefit of a beneficiary. In a revocable living trust, the Grantor, Trustee, and Beneficiary are typically the same person.

When the trust is irrevocable, the Grantor, Trustee, and Beneficiary may all be different people. In a special needs trust, the person with a disability is the beneficiary. Sometimes, the person with a disability is also the Grantor, the person who created the trust.  This might happen if there is a settlement from a lawsuit for example and the person with special needs wants it to be paid to the trust. 

In many if not most cases, the goal may not be to protect the beneficiary’s ability to get public benefits at all. Many people with a disability don’t get special government benefits.  But they do want to protect the beneficiaries from having to manage the assets. Some people are just more susceptible to abuse.

The structure of the arrangement typically reflects the complexity of the family, the desire of siblings and extended family to continue to be involved in the care and attending to the needs of the person with a disability, even if they are not the person directly writing checks.

Example: Care for Zayna

Example: Zayna is a 24-year-old woman with limited ability to communicate, take care of her needs and requires 24-hour care.  Zayna has three healthy siblings, many aunts, uncles, and cousins. Her father, Elias, earns about $70,000 per year and is divorced. Zayna’s mother Sameena cannot contribute, as she is on social security disability. However, Zayna’s adult brother and sisters, brother in laws, sister in law and several aunts, uncles want to help Zayna meet her needs E.lyas creates a third party special needs trust that would ensure Zayna has what she needs in the years to come.

Zayna receives need-based public benefits that are vital to her in living with her various disabilities and her struggle to gain increasing independence, knowledge and dignity.  So the trust needs to be set up and professionally administered to make sure that when Zayna gets any benefit from her trust, it does not end up disqualifying her ability to get any needs-based benefit.

Contributions to the special needs trust will not go against Islamic Inheritance rules unless made after the death of the donor.

If Zayna dies, her assets from the special needs trust will be distributed based on the Islamic rules of inheritance as it applies to her.

When disability planning is not about Public Benefits

Perhaps most families with special needs children do not use any needs-based public assistance.  They are still concerned about special needs and planning for it.

Example:  Khadija, 16, is on the autism spectrum. For those familiar with the autism spectrum, that could mean a lot of things.  For her parents, Sarah and Yacoob, other than certain habits that are harmless and easy to get used to, it means Khadija is very trusting of people. Otherwise, she does well in school, and her parents don’t think she needs way more help than her siblings and she has just as good a chance of leading a healthy and productive life as any 16-year-old girl.

The downside of being too trusting is that the outside world can exploit her.  If she ends up getting inheritance or gifts, she may lose it. The parents decide that when she gets her inheritance, it will be in a trust that would continue through her life.  There will be a trustee who will make sure she has what she needs from her trust, but that nobody can exploit her.

In some ways, what Khadija’s parents Sarah and Yacoob are doing is not so different from what parents might do if they have a child with a substance abuse problem.  They want to give their child her rights, but they don’t want to allow for exploitation and abuse.

Considering your own needs

There are many people who are easy marks for scammers, yet you would be unlikely to know this unless you are either a close friend or family member, or a scammer yourself.  While this often happens to the elderly, it can happen at just about any age. Everyone should consider developing an “incapacity plan” to preserve their wealth even if they lose their executive decision-making ability.

There is this process in state courts known as “conservatorship.” Indeed, entire courtrooms dedicate themselves to conservatorships and other mental health-related issues.  It is a legal process that causes an individual to lose their financial or personal freedom because a court has essentially declared them not competent to handle their affairs. Conservatorships are a public process.  They can cause a lot of pain embarrassment and internal family strife.

One of the benefits of a well-drafted living trust is to protect privacy and dignity during difficult times.

Example: Haris Investing in Cambodian Rice Farms

Haris, 63, was eating lunch at a diner.  In the waiting area, he became fast friends with Mellissa; a thirty-something woman who was interested in talking about Haris’s grandchildren.  The conversation then turned Melissa and her desire to start a business selling long distance calling cards. Haris was fascinated by this and thought it made good business sense. Haris gave Mellissa $20,000.00. The two exchanged numbers. The next day, Mellissa’s number was disconnected.

Haris’s wife, Julie became alarmed by this.  It was out of character for her husband to just fork over $20,000 to anyone on the spur of the moment.  What was worse is that the business failed immediately. 

Three months later,  Haris meets Mellissa at the diner again.  She then convinces Haris to invest $50,000 in a Cambodian rice farm, which he does right away.   His wife Julie was pretty upset.

How living trusts helps

As it happened though, Haris, a few years before, created a living trust.  It has a provision that includes incapacity planning. There are two essential parts to this:  The first is a system to decide if someone has lost their executive decision-making ability. The second is to have a successor Trustee to look over the estate when the individual has lost this capacity.  This question is about Haris’s fundamental freedom: his ability to spend his own money.

If you asked Haris, he would say nothing is wrong with him.  He looks and sounds excellent. Tells the best dad jokes. He goes to the gym five times a week and can probably beat you at arm wrestling. Haris made some financial mistakes. Everyone makes mistakes.

Julie, and his adult children Haroon, Kulsum, Abdullah, and Rasheeda are not so sure it’s just a mistake.  The living trust created a “disability panel.” This panel gets to vote, privately, in if Haris should continue to act as Trustee of his own money.  If they vote that he should not manage his own money, his wife does it for him.

The family has a way to decide an important and sensitive issue while maintaining Haris’ dignity, privacy and wealth.   Haris’s friends don’t know anything about long distance calling cards or a Cambodian rice farm; they don’t know he lost his ability to act as Trustee of his trust.  Indeed the rest of the world is oblivious to all of this.

Planning for everyone

Islamic inheritance is fard and every Muslim should endeavor to incorporate it into their lives.  As it happens it is an obligation Muslims, at least those in the United States, routinely ignore or deal with inadequately.  However, there is more to planning than just what shares go to whom after death. Every family needs to create a system. There may or may not be problems with children or even with yourself (other than death, which will happen), but you should do whatever you can to protect your family’s wealth and dignity while also fulfilling your obligations to both yourself and your family.

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Ahmed Shaikh is a Southern California Attorney. He writes about inheritance, nonprofits and other legal issues affecting Muslims in the United States. He is the co-author of "Estate Planning for the Muslim Client," published by the American Bar Association. His Islamic Inheritance website is www.islamicinheritance.com

2 Comments

2 Comments

  1. Avatar

    Osman Umarji

    May 17, 2019 at 1:36 PM

    JazakumAllahu khair for this wonderful article. As a parent to a child with special needs, this article was incredibly helpful and informative in planning for his future.

  2. Avatar

    Huma

    May 27, 2019 at 2:04 PM

    جزاك الله خيراً

    I do not have any special needs members and I still found this article so informative! May Allah set grant strength to those who do make these decisions and create empathy in our hearts for them.

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#Current Affairs

This Eid And Beyond Boycott Goods Made With Enslaved Labor Of Uyghurs Even If It Is Your Favorite Brand

Bidding farewell to Ramadan, celebrating Eid?

Well, the Muslims of East Turkestan under Chinese occupation had neither Ramadan nor will they have Eid…

Not only that, the Chinese Communist Party (CCP) run government has transferred Uyghurs and other ethnic minority citizens from East Turkestan to factories across the country. Under conditions that strongly suggest forced labour, Uyghurs are working in factories that are in the supply chains of at least 83 well-known global brands in the technology, clothing and automotive sectors, including Nike, Gap, Adidas, Ralph Lauren, Carters and others. Read Uyghurs for Sale for more information

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CCP is also pressuring governments across the world to extradite Uyghurs back to occupied East Turkestan.

Here is what you can do to help them:

Action Items

  1. Keep making dua for the oppressed of East Turkistan and the world.
  2. Boycott Chinese products! Do not be complicit in slave labour. Start with focusing on the companies in the graphic. Share it with #SewnWithtTears, #StopChina, #BoycottChina. Write to them and demand that they do better.
  3. Raise awareness on the plight of Uyghurs and the East Turkistani cause. Learn more at SaveUighur.org
  4. Work towards reducing your country’s economic dependence on China.
  5. Build alliances with all people of conscience to demand a cessation of China’s oppression of all faith groups, be it Muslim Uyghur, Hui; Chinese Christian; or Tibetan Buddhist.
  6. Encourage and promote fairer trade and commerce with Muslims and others rather than China.
  7. Inquire about Uyghur diaspora members in your area. Organize to help out orphans, widows, and students.
  8. Pressure governments to provide legal protection to Uyghur refugees-exiles by granting either citizenship or refugee/asylee status. Stop the “extradition/repatriation” of Uyghurs to China!
  9. Get your universities/endowments to divest from China. Raise awareness about Chinese espionage and hired guns in academia. Demand academic and financial support for Uyghur scholars and students. Request more academic attention and funds for Central Asian, Uyghur, Turkistani studies. 

Read a greater discussion of action items in A Response to Habib Ali Al-Jifri’s Comments on the Uyghurs, which also contains a greater discussion on East Turkistan’s history and its current situation. A condensed Arabic version of the article can be found here

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#Islam

30 Khawaatir in 30 Days- A Parent’s Guide | Day 9: A Good Word

Now that we have learnt about the life of this world, let’s talk about a good word.

I want you all to close your eyes and think of a beautiful tree. 

Question: Who can tell me what their tree looks like? Is the tree big and strong? Does it have lots of branches and leaves? Does it have fruit?

Now, I want you to think of a time when someone said something really nice to you.

Question:  What are some of the nice statements you remember people telling you?

Question: How did those statements make you feel?

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Yes, they fill us up with a warm feeling. We may have felt proud of ourselves and we may have felt loved. Do you know that Allah [wt] describes a good word to a good tree? 

In Surah Ibrahim, Allah subḥānahu wa ta'āla (glorified and exalted be He) says:

أَلَمْ تَرَ كَيْفَ ضَرَبَ اللَّهُ مَثَلًا كَلِمَةً طَيِّبَةً كَشَجَرَةٍ طَيِّبَةٍ أَصْلُهَا ثَابِتٌ وَفَرْعُهَا فِي السَّمَاءِ 

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تُؤْتِي أُكُلَهَا كُلَّ حِينٍ بِإِذْنِ رَبِّهَا ۗ وَيَضْرِبُ اللَّهُ الْأَمْثَالَ لِلنَّاسِ لَعَلَّهُمْ يَتَذَكَّرُونَ 

Have you not considered how Allah presents an example, [making] a good word like a good tree, whose root is firmly fixed and its branches [high] in the sky? [Surah Ibrahim; 24]

It produces its fruit all the time, by permission of its Lord. And Allah presents examples for the people that perhaps they will be reminded. [Surah Ibrahim; 25]

Question: Now, I want you to think of a time when someone said something mean to you. How did that make you feel?

It’s not fun to remember the mean stuff right? Allah subḥānahu wa ta'āla (glorified and exalted be He) continues in Surah Ibrahim and says:

وَمَثَلُ كَلِمَةٍ خَبِيثَةٍ كَشَجَرَةٍ خَبِيثَةٍ اجْتُثَّتْ مِن فَوْقِ الْأَرْضِ مَا لَهَا مِن قَرَارٍ

And the example of a bad word is like a bad tree, uprooted from the surface of the earth, not having any stability. [Surah Ibrahim; 26] 

Question: What do you think are good words we can use to build strong, firmly rooted trees?

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#Islam

30 Khawaatir in 30 Days- A Parent’s Guide | Day 8: The Life of This World

Now that we have learnt about qalbun saleem, let’s talk about the life of this world.

Question: Do you know that there is an ayah in the Qur’an that takes us through all the stages of life and tells us what we find to be the most important aspect based on our age?

This ayah is found in the chapter named Al-Hadeed. 

Question: Does anyone know what Hadeed means? 

Yes! It means iron! The verse in Surah al-Hadeed starts by saying:

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اعْلَمُوا أَنَّمَا الْحَيَاةُ الدُّنْيَا لَعِبٌ وَلَهْوٌ 

“Know that the life of this world is play and amusement.”

Question: When you were really, really young, what was something that was important to you?

Yes, playing! You would use your imagination, play with your toys, and build legos. That is what  لَعِبٌ la’bun means. Then you got a bit older and you wanted to hear stories and be entertained. 

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Question: Can you tell me in what other ways you’re entertained? (Examples can include watching TV, reading books, etc)

Yes! This is what is meant by  لَهْوٌ l(ahwun). Then we get a bit older and our goals change. The ayah continues by saying, وَزِينَةٌ وَتَفَاخُرٌ بَيْنَكُمْ (wa zeenatun wa tafakhirun baynakum). All of a sudden, you become a tween and a teenager, and you really care about your looks. You want to dress in the nicest clothing and look beautiful. This is zeena

Then you get even older and you enter college. You compete with your classmates and show off your knowledge and skills to impress future employees. This is tafaakhirun baynakum , i.e. boasting with one another. 

Then what usually happens after college? Work, marriage, and children! The ayah continues by saying, وَتَكَاثُرٌ فِي الْأَمْوَالِ وَالْأَوْلَادِ (wa takathur fil amwaali wal-awlaad), i.e. and competition in increasing wealth and children.

As parents, we try to give you the best life and education, and we work hard to provide for you. But, we always have to remember that it won’t be permanent, right? 

Question: We will be so happy, like farmers watching our seeds grow into beautiful plants, but what happens in the fall when it’s no longer sunny and becomes windy and cold? 

Yes, the plants turn yellow. Remember that toy you used to love playing with as a really little kid? Is it as interesting to you anymore? Remember that TV show you could not stop watching? You even memorized all the lines in it. Do you remember the title? Are you interested in something else now?

This is the example of our whole life. Once we get something we once were so excited to have, we realize that after some time has passed, that it has “turned yellow” to us. 

Question: What do you think that means?

Yes! It’s not as interesting as it once was. So knowing that this is going to happen, how can we make sure to not get distracted by the bright and shiny and stay focused on Allah subḥānahu wa ta'āla (glorified and exalted be He)?

We’re in luck, because Allah subḥānahu wa ta'āla (glorified and exalted be He) gives us the answer! Allah subḥānahu wa ta'āla (glorified and exalted be He) says:

 “سَابِقُوا إِلَىٰ مَغْفِرَةٍ مِّن رَّبِّكُمْ وَجَنَّةٍ 

Race toward forgiveness from your Lord and Jannah! 

Question: How do you think we can race towards Allah subḥānahu wa ta'āla (glorified and exalted be He)?

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