Chitra lyer, a Special Needs Parent and a Trustee at Forum for Autism on the documents required to ensure that the child with special needs is well looked after.
The first step is to know exactly which documents are essential, the legal actions needed to protect your child and the correct steps to secure your child’s financial future.
Without these, you will always wonder if your Child’s future is secure and whether you will be able to protect him/her legally and financially, especially when you are no longer around.
With these, you can ensure that he/she will be well cared for, but you will be at ease and enjoy life with your Child.
It is important to have all these 6 documents in place at the earliest, so you can be sure that your Child is at no risk under any circumstance.
Crucial documents that parents need to make for a child with special needs:
1) UDID Card: Unique Disability Identity Card:
A Unique ID (UDID) card is for Persons with Disabilities (PwDs). It is also called Swavlamban Card. This is a single document of identification and verification of your Special Needs Child, to avail various benefits in the future.
UDID card ensures:
- That your Child is registered in the Centralized National Database as a Person with Disabilities.
- Non-duplication of his/her PwD data.
- That the card includes all necessary details about a disabled person and bypasses the need to carry multiple documents.
- That PwDs can avail of schemes and benefits provided by the Government through its various Ministries and their Departments. This card is valid all over India.
How to apply for it? - Online Application.
Apply Now: http://www.swavlambancard.gov.in/pwd/application
Note: It is a card issued by the central government, the way your Aadhaar is important similarly the UDID card is also for a person with a disability. It’s not a replacement of the aadhaar card, is an additional card that you need to have. It’s also called the Swavlamban card. Slowly the government is doing a transition where instead of a disability certificate now you can directly apply for a UDID card. In fact, even if you have a disability certificate you can apply for a UDID card. This can be done online, the process is simple but long like any other government process. If you don’t have a disability certificate, you then have to go the hospital which has been assigned to you to get your testing done, but if you have the certificate you can get it by just filling the form.
2) Legal Guardianship Certficate
What is it? - All parents are legal guardians of their Child till the Child attains 18 years of age. After that parents are no longer legal guardians. Persons with autism, cerebral palsy, mental retardation and multiple disabilities are in a special situation, because, when they attain 18 years of age, they are not always capable of managing their own lives or taking legal decisions for their own benefit.
In such a situation, it is important as parents to appoint yourselves as Legal Guardians. You can also decide who will be the Legal Guardian after your death and take legal decisions on your behalf for your Child and his/her property, in your absence.
How to Apply? - To register a Legal Guardian for your Child, you will have to fill an Online Application on the National Trust website: https://www.thenationaltrust.gov.in/content/innerpage/guardianship.php
Note: I cannot emphasize enough on how important it is to have a legal guardianship certificate for your child. For those who are wondering why it is so important to have a legal guardianship/ document, if you want to continue taking decisions for your child with special needs, then you need to have proof of law which is the legal guardianship. Not only does this allow protecting your child’s interest, it also prevents any confusion that might arise in future. If there is a case of any financial fraud with the asset that is in your child’s name, you can step up rightfully as the legal guardian for your child. In many cases, especially in medical cases someone needs to take a stand legally. Parents, at first are the only ones who can make these decisions.
You need to talk on your child’s behalf in case of any law related matters. When you tell someone that your child has special needs and a disability, you are also legally supposed to have a guardianship certificate ready to talk on your child’s behalf. It automatically makes your authority on the matter very clear.
3) Letter of Intent/ Letter of Wishes:
What is it? - It is one of the most valuable documents you can prepare for your Legal Guardian. It is not a formal legal document. A LOI (Letter of Intent) outlines, in detail, the people, places and services your Child requires and receives. It is a guide for future caregivers to make the most appropriate life decisions, to help fulfill fiduciary responsibilities for your Child.
A LOI should list your Child’s likes, dislikes, family members, friends, 1st circle of connect, 2nd circle of connect, persons whom you trust and persons who are caregivers for your Child in your absence.
The Legal Guardian/Trustee should be aware of your Letter of Intent, which you should discuss and explain to him/her regularly.
You not only want your children to be safe after you, you want them to have the same lifestyle, same luxury, same comfort that you would have provided for them. Sometimes the child may not be able to communicate all of this by himself/herself, so it is important that you write them down. This is just the document that supports the Trust and the WILL. It is not a replacement or a legal document, but it is equally important.
LOI are guidelines/ thought processes that you would want someone to do for your child while they are taking care of them. Something as simple as their interests, likes-dislikes or the medical accommodation your child may need. Everything goes into that piece of document. A simple thing that parents can do is to have a documented page about a day or a week in the life of the child, then maybe a year in the life of the child - and update this document.
4) Will
What is it? - A Will is a legal document which is necessary to transition assets to the next owner. It is important that parents make a Will early in life to protect their Child.
How to make a Will? - A simple hand written Will is good. It is advisable to make individual Wills for both Parents.
You should be aware of the three important parties in a Will.
- Testator: The parent. (Each parent makes a separate will)
- Executor: The person you choose to carry out directions contained in the Will.
- Beneficiary: Your Child/Child’s Trust and others to whom you wish to leave your assets.
The Will should be witnessed by two people, one of these should be a doctor. You can keep the Will in a Locker, with a Trustworthy Person, or in any easily accessible place.
Why is it necessary to make a Will and what is required to make a Will?
Will is one of the documents which is easily recognized, without any boundaries. There may be other people within the family, who have to receive some of the resources/ assets, it is not only your child with special needs. In that case, a Will becomes really important. You would want to set boundaries for what you have set aside for your child with special needs, and for your other family members. That distinction becomes very clear through the Will.
It is very important for everyone to have a trust - given that there are some resources or some assets you want to pass on to your child. A Will is made to tell you who is the rightful heir of the money when someone passes away. The rightful heir or the person who is to receive it next, needs to stand up and take it for themselves. A person who is differently abled or with special needs may not be able to stand up for themselves and may not be able to receive it.
5) TRUST
What is it? - A Special Needs Trust is a secure mechanism to protect your Child against financial abuse. It lets you or any other interested party contribute funds to the benefit of your Special Needs Child. These funds can be utilized for his/her residential, medical, therapy, leisure and any other required expenses.
How is a Trust formed? - A Trust is formed with the help of a Lawyer. Below are the four parties required to be present:
- Settlors: This will usually be YOU, as you are the one to make decisions and contribute funds for the benefit of your Child.
- Beneficiary: Your Special Needs Child, for whose benefit funds will be utilized.
- Trustees: These are trustworthy people whom you appoint, to safeguard the funds in the Trust.
- Board of Advisors: These people are instrumental in taking key decisions for your Child but may not be available to take on legal responsibility. They can serve as advisors.
A trust ensures that the person concerned receives his rightful shares.
So what is the structure of the trust? Let me explain this to you first. In a trust, you are basically putting down some money or assets or resources that will continue to benefit your child in your absence. Just imagine there are 4 key parties to this process - the 1st one being the settlors, Settlors are the parents / guardians who are putting in the settlement. So, the word comes from there. They are also interchangeably known as the author of the trust. Authors, because the document that is written legally is known as the trust deed. The authors are the people who are setting the rules and regulations of the roles and responsibilities, how this will function. They are authoring the deed, guiding the deed, so they are known as the authors. 2nd in line comes the person for whose benefit this is being set up - and that person is the beneficiary or the child with special needs. The Beneficiary here may not be able to protect his interests fully, so the trust is set up. What we do is - introduce the third party - people whom you can trust to take on responsibilities in future - these people are known as the trustees. The most common mistakes that people make is - parents often want to become the trustees themselves. They don’t realize that as the settlor or as the author of the trust, they can legally structure this in such a way that they retain the ultimate control/ authority and the trustees simply follow directions. They achieve nothing by becoming trustee. The 4th party in this set up is the Board of Advisors. So, the settlors and the trustees can always fall back on these people for their advice. Involving each and every person in the trust, in the process, is very important. It is the parent’s responsibility to direct, guide, help the future trustees to take on this responsibility.
I have been urging and encouraging families on how it’s very important to first start the discussion between husband and wife. When you talk to each other you will first think about who are the people in your life and whether they are trustworthy for your child. That is the process that needs to be done first. You must talk internally, in the family, first the husband and wife, then to your child if he can participate in this discussion, the sibling of the child, then the other people who are involved - they could be your brothers and sisters, your parents, there could be friends whom you know are really amazing with your child... that’s how you start this entire process of identifying who are going to be your trustees.
6) Financial roadmap
What is it? It is essential to create a Financial Roadmap so that your Special Needs Child and your family are cared for. This document alone can make you feel financially secure and ensure that your child has the required finances during his/her lifetime. This Roadmap is created for two generations yours and your child’s.
How to make a financial roadmap?
This process involves:
- Defining the Goals for your special Needs Child and your family
- Reviewing your existing investments and cash flow
- Understanding the Risks faced by your family
- Estimating the corpus required for your goals
- Making the right investments to achieve this Corpus.
You have to start putting a plan in place with a person who can handhold you through this process of financial planning as soon as possible. You need to start financial planning for your special needs child as soon as you know and you realize you are in a unique situation. Remember you have to plan for two life spans, one is yours and the second is the entire life of your child. There is a fair amount of calculation that needs to be worked out. The goals for your child could be his/her monthly expenses, your own monthly expenses, his/her health corpus, your health corpus, your vacation needs and his/her administrative expenses in the future.
You have to put figures and a time frame to each and every goal. How much all of these needs would add up to in the future purely because of inflation is unimaginable. Inflation hits us quite acutely, we don’t realize how it slowly creeps on us. Inflation simply means that the money you have today and what you are spending it on today will not be enough tomorrow, when you want to buy the same product. You need to arrive at how much will be needed for all these expenses for the rest of your and your child's life. Families usually have some investments across fixed deposits, mutual funds, stocks, insurance policies, gold, or property. For each family, the way to reach their goals will be very different. It matters about how much you earn, what are your expenses, how prudent you are, what age bracket you are in, what is your income earning capacity and span, and what are all your current expenses. The earlier you start saving and investing the money, the better the chances to achieve the corpus needed, as your have time on your side. Money needs time to grow, as compounding helps in achieving the desired corpus over time.
I would urge all families, to make a file with all the above mentioned important documents for their child. You should also keep all the medical documents/information, prescriptions, checkup or therapy follow up in one file. This is where you can also keep the UDID card, legal guardianship certificate. Apart from this you can also keep your child’s PAN Card, Aadhaar Card, Trust Pan Card, Passport, School certificates, other identity cards, Education achievements all together in one file.
Where should people keep the documents related to their trusts and wills?
In case of a Trust, it is simple. When you open a bank account a copy of the trust deed is submitted to the bank already. Apart from this, all the trustees and BOA’s should have a signed copy with them. As we are in a digital world, we can simply digitalize the copy and make it password protected and keep it on our computer/ drive.
The Will can be kept in the locker after being digitized. The only person who needs to know where the Will is, is the executor. As long as that person knows, no other person really needs to know about it. It’s important to inform the executor that there is a Will. Sometimes it does happen that if there is no clarity, people start searching for the WILL. Is there any WILL or not is usually the question. In India when we think of making a will it is like we are associating it with death. In case of special needs families, it is extremely important to make a Will keeping the child’s interests.
The Solution is right there and people are willing to help too. We only need to look around and see what is required and best suited for our child.
Download the PDF Document from the link below
The above documents have been prepared by Chitra Iyer with assistance from Shreya Jain. They both have been conducting workshops on legal documents required for special needs children
Chitra Iyer has a 22 year old son Shravan who has Autism, Epilepsy and Cerebral Palsy. She is a Financial Coach and the CEO at MFA, a 15-year-old organization that specializes in Goal-based Investing. They help families make smart, informed choices and decisions about money and have a dedicated practice for Parents with Special Needs Children.
