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Visiting the Comatose – A Handy Guide

Hiba Masood

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Over the last eight months, after painful illnesses which affected them physically and neurologically, both my parents have passed away. While there is so much to process and reflect over when it comes to their lives and their deaths, there is something specific I feel compelled to address.

My father and mother had the privilege of dying in the comfort of their home but before their deaths, they each experienced a deep coma for extended periods of time. Naturally, we had our share of visitors. Close family, extended family, friends, acquaintances, staff old and new, neighbors, and veritable strangers off the street trooped through our doors to pay their respects and we felt blessed to be surrounded with so much love and support.

MashaAllah, there are countless narrations and articles written about the importance of visiting the sick. My personal favorite is the narration by Jaabir (may Allah be pleased with him) who said: The Messenger of Allah (peace and blessings of Allah be upon him) said: “Whoever visits a sick person is plunged into mercy until he sits down, and when he sits down, he is submerged in it.” The visual of being awash in Allah’s mercy is a beautiful one!

Within the realm of visiting the sick, there is a special subset that exists – that is the people of coma, those who are so sick that they are there but not there, physically with us but mentally/neurologically in a place beyond our understanding. Visiting the people of coma is a special challenge and inshaAllah carries special reward because it is truly difficult to attempt what will almost certainly be an emotionally-laden, one-way communication.

Because I have a ticker tape of observations and opinions on everything always running through my head, I had many thoughts while watching people visit my parents and I would like to share some below.

Please know that the ideas expressed here are not as a result of me being judgmental of people, ungrateful for those who tried or behaving holier than thou. I don’t think I know better or that even when the need comes, that I will necessarily do better. I’m as shy and awkward as they come. Nevertheless, I like to put these notes down, not as corrective prescriptions, but as initiators of thought and discussion. I love that our generation discusses everything and we try to be “politically correct”. We might fail miserably and often do, but at least the desire to improve is there. I write things down and then you guys give your thoughts and then we agree or disagree with each other and someone, somewhere decides that they will be more aware, more sensitive, more appropriate and in the end, it’s a win for humankind. <she said grandly>

So without further ado, here is your handy guide for when visiting a person in a coma:

1. Approach the coma patient calmly but purposefully

You don’t need to tiptoe. Seriously, they’re not going to wake up. Their family has tried that already. A LOT. I mean, they WANT them to wake up. So, stomp up to them if you want. (ok, jk, don’t.) Walking gingerly or fearfully suggests that the patient is a thing to be scared of. But honestly, comas aren’t contagious. (except, maybe, between my parents…I really think they caught stuff from each other lolz). Walking with a calm but purposeful demeanor demonstrates a relaxed strength which the stressed-out caregiver will definitely appreciate.

2. Say salaams upon reaching the bedside

Just like you would greet a person who was awake, so must you greet the people of the coma. Our sense of hearing is the last to go, apparently, so chances are quite high that the coma patient you’re visiting can still hear you. Experts recommend you speak in a slightly louder than normal volume and a slightly higher than normal pitch. The key word here is ‘slightly‘. If I told you the number of people that would practically yell at my mother and father, it would fill a book! Suffice to say, it is cringe-worthy and unnecessary to scream.

It’s also worth noting here that just because someone is in a coma, it doesn’t mean that they are suddenly dumber than normal. So, you don’t need to treat them like a child and coo your greetings or tell them they are being “naughty” by being unresponsive.

3. Express words of encouragement

Encouraging, supportive words are an important part of the psycho-therapy experience that both patient and caregiver require. Your positivity will have a ripple effect! The Prophet’s ṣallallāhu 'alayhi wa sallam (peace and blessings of Allāh be upon him) favorite utterance to the sick was similarly upbeat and you should try it:  “La ba’s, tuhoor in sha Allaah” (No worries, it is a purification, if Allah wills).” Some variations of all of the following are also acceptable:

  • I am praying for you.
  • You are constantly in my thoughts.
  • Every day I recite xyz especially for you.
  • So and so asks about you regularly.
  • Don’t worry, you are getting better.
  • You are so strong, I know you are fighting this.
  • Remember us in your prayers.

Things not to say include (and these are all from real-life examples, trust you me): yelling the patient’s name repeatedly, because honestly, they aren’t comatose from lack of being personally addressed; asking question after question and then pausing hopefully for an answer (spoiler alert: unless you are in rehearsals for a B-grade Bollywood production, they won’t suddenly flicker their eyes open and beatifically answer); speaking about them super-anxiously while 3 inches from their face, “Why is her lip blistered? Why is his hand doing that? Will she pull through this or DIE??!!!!!”.

In general, you want to aim for a monologue approach where you say your piece and then hold your peace.

4. Say a prayer 

Prayer, even for the most secular, is oddly comforting, especially in times of stress and sorrow, so do go through the motions as you stand beside the sick. Also, it gives you something concrete to do as opposed to blankly staring at someone in a coma.

For Muslims, it is ideal to raise your hands in dua, say bismillah and recite the above supplication. Also, to consider:

  • Surah Fatiha
  • Ayatul Kursi
  • Surah Falaq
  • Surah Nas

If you aren’t religious, raise your hands and mutter some kind thoughts or healing woo-woo stuff anyways. You can also ask your host if there is anything specific you can read (most people have some sort of printed booklet of prayers handy). After praying, follow the sunnah and blow on the sick person. Not on their face because, germs. Somewhere in the direction of their mid-torso should be fine, making sure to keep a halal distance.

I recognize that the sunnah practice also involves placing your right hand on the sick person’s forehead while reciting duas but given all the unknown variables (What is the patient’s immunity level like? How germaphobic are the caregivers? What is the mehram situation?), a more generic approach has been suggested here.

5. Say a proper goodbye 

It is proper etiquette to conclude your visit with the patient and not just with your host. Tell the sick person things like:

  • It was good to see you.
  • I will come again, inshaAllah.
  • Take care.
  • Allah is with you.

Do not just turn away silently and sadly because it looks a bit unthoughtful. I mean, yes, the person is practically vegetative but to the hosts, (who you can be sure have been watching everything with an eagle eye) the sick person remains an important and dear member of their family and someone who they would like to be respected.

– – –

Of course, your visit need not be an exact replica of the above suggestions (though if it were, that would be rather marvelous). Broadly speaking though,

It is usually okay to:
  • Pat the patient’s hand or kiss them on the head, but feel free to check with your host.
  • Drip a few tears. No one likes to be pitied but most caregivers feel a reassuring gratification that someone else is feeling their sorrow.
  • Hug the caregiver and tell them how brave and strong they are because who doesn’t like praise or needs upliftment?
  • Bring food items for the caregivers because carb distraction is the best distraction.

It is not okay to:

– Beg for reassurance from the caregiver who doesn’t actually have any answers. Asking them constantly whether their patient will recover is tension they don’t need.

– Cry hysterically as not only is that inelegant and unrecommended, it would also mean now someone feels obliged to comfort you.

– Speak about the sick in earshot (remembering that sense of hearing often remains till the end).

– Criticize the care being given. Saying how you would’ve done things differently or offering insight that is only possible in hindsight is painful to the listener who is already struggling with self-doubt.

– Share stories of death and doom. Trust me, death is on everyone’s mind when it comes to loved ones in a coma. The last thing you should do (again, true story) is spend the entirety of your visit telling story after horrific story of random folks’ untimely demise.

– Offer too much along the lines of vague miracle cures. “I’ve heard raw onion paste rubbed on the chest does wonders for stimulating the hippocampus!”, “Reciting Surah Rahman 11 times after Fajr every day for 41 days is a sure-shot coma blaster,” and things like that puts the caregiver in the awkward position of either agreeing with you (and subsequently lying through their teeth that they will surely try this wonderful idea) or disagreeing with you (and potentially upsetting you).

Apart from all of this, be neat and tidy in appearance (no one likes a smelly visitor), bring a little something for the hosts (my personal favorites are things high in sugar) and for the love of all that is good, keep your visit short – aiming at the sweet spot where everything meaningful has been said, no awkward silences have ensued, no one felt required to serve you tea and patient routines aren’t disturbed – roughly between 15 to 20 minutes is ideal.

And that’s it! Go forth in goodness and be submerged in His Mercy. May the force be with you and Allah’s shifa be all around you.

– – –

Hiba Masood is a writer and storyteller. You can catch her daily musings on life, parenting, marriage and more at www.facebook.com/etdramamama OR on Insta @hibamasood

9 Comments

9 Comments

  1. Avatar

    UA

    November 27, 2018 at 2:10 AM

    Your humor in all of this is so inspiring because despite the grief you must be feeling, you choose to convey your ideas with determined cheerfulness. May Allah (swt) Grant both your parents Jannat-ul-Firdous and may they be together in each other’s company, Ameen.

  2. Avatar

    AM

    November 27, 2018 at 3:19 AM

    Solid article

  3. Avatar

    Huma

    November 27, 2018 at 5:59 AM

    This, like all of your writings,has left me speechless and introspecting.Each word and thought resonates deeply and yet it’s an issue that has gone neglected so far.How many of us who have faced bereavement , choose to share our innermost thoughts in this cheerful and emotive manner?Thank you for sharing this beautifully informative ”handy guide”with us here.
    Sending you loads of hugs( sorry carbs and sugars not possible) to you all.
    May your parents rest in eternal peace.Aameen.

  4. Avatar

    Fizzah

    November 27, 2018 at 6:02 AM

    Good, decent parents they must have been, because they raised a daughter like you :-)

    May Allah show them His Mercy in Barzakh and Aakhirah, and may He increase your sabr and grace and understanding of Everything

  5. Avatar

    Maryam Ijaz

    November 27, 2018 at 8:48 PM

    A very well written article which can definitely help anyone visiting a coma patient and the manner its explained is in a very lay man terms I salute to your strength. May Allah grant Jannat to both of your parents Ameen

  6. Avatar

    Sara

    November 27, 2018 at 11:33 PM

    A topic less than seldom talked about yet so important. Jazakillahkhair. Wonderfully insightful and close to reality. Duas

  7. Avatar

    Mohsin

    December 2, 2018 at 8:42 AM

    mashaAllah, this is a very nice piece. May Allah swt accept.

  8. Avatar

    Azleena

    December 6, 2018 at 7:54 AM

    Salams, excellent article. I am a chaplain and a socia work student, and having spent time with complete strangers in a coma (by request of family members), I would suggest adding one more thing to the To Do list:
    Do sit by the patient and read a chapter from a book, article or tell them about something that has happened in your life recently. There is a possibility that the patient still can hear you, and they may be thirsting for connection other than just prayer and sympathy. If you know what books they enjoyed reading when they were healthy, or what their favorite hobbies were, even better. They would probably be ecstatic to have a friend or family member tell them the latest developments or news in that area (sports, politics, entertainment, etc). Or even tell them what has been going on in your social circle (births, events, etc). If they have favorite nasheeds or ghazals, you could play them or recite them occasionally. I know these are things I would want to hear if I were the patient. The patient, while not being able to respond, is still alive, and deserves the same respect and love we would give to anyone else, if not more.

  9. Avatar

    Aly Balagamwala

    April 10, 2019 at 3:29 AM

    Jazakillahu Khairin . This was very helpful though may Allah protect all from being in this state.

    *Comment above is posted in a personal capacity and may not reflect the official views of MuslimMatters or its staff*

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#Islam

What Does Sharia Really Say About Abortion in Islam

Abortion is not a simple option of being pro-life or pro-choice, Islam recognizes the nuance.

Reem Shaikh

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The following article on abortion is based on a research paper titled ‘The Rights of the Fetus in Islam’, at the Department of Sharia at Qatar University. My team and I presented it to multiple members of the faculty. It was approved by the Dean of the Islamic Studies College, an experienced and reputed Islamic authority.

In one swoop, liberal comedian Deven Green posing as her satirical character, Mrs. Betty Brown, “America’s best Christian”, demonized both Sharia law as well as how Islamic law treats abortion. Even in a debate about a law that has no Muslim protagonist in the middle of it, Islam is vilified because apparently, no problem in the world can occur without Islam being dragged into it.

It is important to clarify what Sharia is before discussing abortion. Sharia law is the set of rules and guidelines that Allah establishes as a way of life for Muslims. It is derived from the Qur’an and the Sunnah, which is interpreted and compiled by scholars based on their understandings (fiqh). Sharia takes into account what is in the best interest for individuals and society as a whole, and creates a system of life for Muslims, covering every aspect, such as worship, beliefs, ethics, transactions, etc.

Muslim life is governed by Sharia – a very personal imperative. For a Muslim living in secular lands, that is what Sharia is limited to – prayers, fasting, charity and private transactions such as not dealing with interest, marriage and divorce issues, etc. Criminal statutes are one small part of the larger Sharia but are subject to interpretation, and strictly in the realm of a Muslim country that governs by it.

With respect to abortion, the first question asked is:

“Do women have rights over their bodies or does the government have rights over women’s bodies?”

The answer to this question comes from a different perspective for Muslims. Part of Islamic faith is the belief that our bodies are an amanah from God. The Arabic word amanah literally means fulfilling or upholding trusts. When you add “al” as a prefix, or al-amanah, trust becomes “The Trust”, which has a broader Islamic meaning. It is the moral responsibility of fulfilling one’s obligations due to Allah and fulfilling one’s obligations due to other humans.

The body is one such amanah. Part of that amanah includes the rights that our bodies have over us, such as taking care of ourselves physically, emotionally and mentally – these are part of a Muslim’s duty that is incumbent upon each individual.

While the Georgia and Alabama laws in the United States that make abortion illegal after the 6-week mark of pregnancy are being mockingly referred to as “Sharia Law” abortion, the fact is that the real Sharia allows much more leniency in the matter than these laws do.

First of all, it is important to be unambiguous about one general ruling: It is unanimously agreed by the scholars of Islam that abortion without a valid excuse after the soul has entered the fetus is prohibited entirely. The question then becomes, when exactly does the soul enter the fetus? Is it when there is a heartbeat? Is it related to simple timing? Most scholars rely on the timing factor because connecting a soul to a heartbeat itself is a question of opinion.

Web MD

The timing then is also a matter of ikhtilaf, or scholarly difference of opinion:

One Hundred and Twenty Days:

The majority of the traditional scholars, including the four madhahib, are united upon the view that the soul certainly is within the fetus after 120 days of pregnancy, or after the first trimester.

This view is shaped by  the following hadith narrated by Abdullah bin Masood raḍyAllāhu 'anhu (may Allāh be pleased with him):

قال رسول الله صلى الله عليه وسلم: إن أحدكم يجمع خلقه في بطن أمه أربعين يوما ثم يكون في ذلك علقة مثل ذلك ثم يكون في ذلك مضغة مثل ذلك ثم يرسل الملك فينفخ فيه الروح..

“For every one of you, the components of his creation are gathered together in the mother’s womb for a period of forty days. Then he will remain for two more periods of the same length, after which the angel is sent and insufflates the spirit into him.”

Forty Days:

The exception to the above is that some scholars believe that the soul enters the fetus earlier, that is after the formation phase, which is around the 40 days mark of pregnancy.

This view is based on another hadith narrated by Abdullah bin Masood raḍyAllāhu 'anhu (may Allāh be pleased with him):

قال رسول الله صلى الله عليه وسلم: إذا مر بالنطفة إثنتان وأربعون ليلة بعث الله إليها ملكاً، فصوره، وخلق سمعها وبصرها وجلدها ولحمها وعظمها…

“If a drop of semen spent in the womb forty-two nights, Allah sends an angel to it who depicts it and creates its ears, eyes, skin, flesh and bones.”

Between the two views, the more widespread and popular opinion is the former, which is that the soul enters the fetus at the 120 days (or 4 months) mark, as the second hadith implies the end of the formation period of the fetus rather than the soul entering it.

Even if one accepts that the soul enters the fetus at a certain timing mark, it does not mean that the soul-less fetus can be aborted at any time or for any reason. Here again, like most matters of Islamic jurisprudence, there is ikhtilaf of scholarly difference of opinion.

No Excuse Required:

The Hanafi madhhab is the most lenient, allowing abortion during the first trimester, even without an excuse.

Some of the later scholars from the Hanafi school consider it makruh or disliked if done without a valid reason, but the majority ruled it as allowed.

Only Under Extreme Risks:

The Malikis are the most strict in this matter; they do not allow abortion even if it is done in the first month of pregnancy unless there is an extreme risk to the mother’s health.

Other Views:

As for the Shafi’i and Hanbali schools of thought, there are multiple opinions within the schools themselves, some allowing abortion, some only allowing it in the presence of a valid excuse.

Valid excuses differ from scholar to scholar, but with a strong and clear reason, permissibility becomes more lenient. Such cases include forced pregnancy (caused by rape), reasons of health and other pressing reasons.

For example, consider a rape victim who becomes pregnant. There is hardly a more compelling reason (other than the health of the mother) where abortion should be permitted. A child born as a result in such circumstances will certainly be a reminder of pain and discomfort to the mother. Every time the woman sees this child, she will be reminded of the trauma of rape that she underwent, a trauma that is generally unmatched for a woman. Leaving aside the mother, the child himself or herself will lead a life of suffering and potentially neglect. He or she may be blamed for being born– certainly unjust but possible with his or her mother’s mindset. The woman may transfer her pain to the child, psychologically or physically because he or she is a reminder of her trauma. One of the principles of Sharia is to ward off the greater of two evils. One can certainly argue that in such a case where both mother and child are at risk of trauma and more injustice, then abortion may indeed be the lesser of the two.

The only case even more pressing than rape would be when a woman’s physical health is at risk due to the pregnancy. Where the risk is clear and sufficiently severe (that is can lead to some permanent serious health damage or even death) if the fetus remained in her uterus, then it is unanimously agreed that abortion is allowed no matter what the stage of pregnancy. This is because of the Islamic principle that necessities allow prohibitions. In this case, the necessity to save the life of the mother allows abortion, which may be otherwise prohibited.

This is the mercy of Sharia, as opposed to the popular culture image about it.

Furthermore, the principle of preventing the greater of two harms applies in this case, as the mother’s life is definite and secure, while the fetus’ is not.

Absolutely Unacceptable Reason for Abortion:

Another area of unanimous agreement is that abortion cannot be undertaken due to fear of poverty. The reason for this is that this mindset collides with having faith and trust in Allah. Allah reminds us in the Quran:

((وَلَا تَقْتُلُوا أَوْلَادَكُمْ خَشْيَةَ إِمْلَاقٍ ۖ نَّحْنُ نَرْزُقُهُمْ وَإِيَّاكُمْ ۚ إِنَّ قَتْلَهُمْ كَانَ خِطْئًا كَبِيرًا))

“And do not kill your children for fear of poverty, We provide for them and for you. Indeed, their killing is ever a great sin.” (Al-Israa, 31)

Ignorance is not an excuse, but it is an acceptable excuse when it comes to mocking Islam in today’s world. Islam is a balanced religion and aims to draw ease for its adherents. Most rulings concerning fiqh are not completely cut out black and white. Rather, Islamic rulings are reasonable and consider all possible factors and circumstances, and in many cases vary from person to person.

Abortion is not a simple option of being pro-life or pro-choice. These terms have become political tools rather than sensitive choices for women who ultimately suffer the consequences either way.

Life means a lot more than just having a heartbeat. Islam completely recognizes this. Thus, Islamic rulings pertaing to abortion are detailed and varied.

As a proud Muslim, I want my fellow Muslims to be confident of their religion particularly over sensitive issues such as abortion and women’s rights to choose for themselves keeping the Creator of Life in focus at all times.

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#Life

Why I Turned to Tech to Catch Laylatul Qadr

Make sure you maximize your sadaqah

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By Ismael Abdela

My life, just like yours, is sooo busy. So naturally, as the tech nerd I am, I turn to tech to help me manage my regular routine including project management apps to manage my daily tasks. I even have a sleeping app that wakes me up at the optimum time (whatever that means!). But even though tech has changed everything in all sectors and helped make efficiencies in my daily life, it had had little impact on my religious activities.

A few years ago, whilst I was preparing for the last 10 nights of Ramadan, it hit me – why doesn’t something exist that automates my donations during these blessed nights to catch Laylatul Qadr. Rather than putting a reminder on my phone to bring out my bank card every night and inputting it into a website – why doesn’t something exist that does it for me, solving the problem of me forgetting to donate. After all we are human and it’s interesting that the Arabic word for human being is ‘insan’ which is derived from the word ‘nasiya’ which means ‘to forget.’ It is human nature to forget.

So the techie in me came out and I built the first scrappy version of MyTenNights, a platform to automate donations in the last 10 nights of Ramadan (took two weeks) because I wanted to use it myself! I thought it would be cool and my friends and family could use it too. That same year, nearly 2000 other people used it – servers crashed, tech broke and I had to get all my friends and Oreo (my cat) to respond to email complaints about our temperamental site!

I quickly realised I wasn’t alone in my need  – everyone wanted a way to never miss Laylatul Qadr! Two years down the line we’ve called it MyTenNights, and our team has grown to 10, including Oreo, senior developers, QA specialists, brand strategists, creative directors and more. It fast became a fierce operation – an operation to help people all over the world catch Laylatul Qadr!

Last year alone we raised almost $2 million in just 10 days – and that was just in the UK. We’ve now opened MyTenNights to our American, Canadian. South African and Australian brothers and sisters and we’re so excited to see how they use it! We’ve made it available through all the biggest house name charities – Islamic Relief, Muslim Aid, Helping Hand, Penny Appeal, you name it! All donations go directly to the charity donors choose – all 100% of it.

Looking back at the last couple of years – it feels surreal: The biggest charities in the world and tens of thousands of users who share my need to be certain they’ve caught Laylatul Qadr. Although I hear many impressed with the sheer amount MyTenNights has raised for charity (and that excites me too!), it’s not what motives me to go on. What excites me most is the growing number of people who catch Laylatul Qadr because we made it easier.

I often tell my team that the number of people that use MyTenNights is the only metric we care about, and the only metric we celebrate. It makes no difference to us whether you donate $1 or a million – we just want you to catch Laylatul Qadr and for you to transform your Akhirah, because (after Allah) we helped you do it.

To catch Laylatul Qadr with MyTenNights, visit their website MyTenNights.com

Ismael Abdela is a Law & Anthropology graduate from the London School of Economics. He spent some years studying Islamic Sciences in Qaseem, Saudi Arabia. He is now a keen social entrepreneur. Ismael likes to write about spiritual reflections, social commentary, and tafsīr. He is particularly interested in putting religion in conversation with the social sciences.

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#Life

How Do Muslims Plan for Disability

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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?

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.

Please Stand By

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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