How do parents of children with disabilities strategise for their children's future?

Future planning for any family who have got a special need dependent can be broken into two aspects.

One is the financial and the other one is the legal.

Now what is financial planning?

Financial planning is all about identifying the future requirement.

So if parents are not there tomorrow, what is the amount which will be required for the lifetime care of special needs dependent.

Also, along with the parents, what will, how they are going to work with, how they’re going to work at their retirement, what is the amount of money which would be required for their retirement.

Now the retirement planning includes, uh, planning for two generations.

So, one generation is themselves and the second generation is the child.

So when any parents, any family talk about retirement planning, so, there are two corpuses which needs to be planned, one is for them self and second is for the other parent.

So effectively, from a traditional planning, a family with a special need dependent has a much much higher requirement and that’s why financial planning is important and that’s where financial planning comes into picture.

The second aspect I spoke about is the legal planning.

What after us?

Where the child is going to live?

Who is going to take care of him?

Uh who what are there any legal documents to be prepared?

Are there any people who need to be assigned for the future care?

So all these questions are important and I would just say that in a traditional planning, the legal planning aspect end up with uh properly uh probably preparing a will, but when you talk about special children families, it start with preparing a will.

There are lot many angles to be covered up.

So these are the two aspect and a special needs planning uh happens only when you integrate financial and legal planning and prepare a comprehensive planning for the future.

What legal considerations must families with a member who has special needs, address?

So, any uh, family who have got a special need dependent, the biggest concern is, what after us?

What’s going to happen after us?

Where the child going to reside who’s going to take care of him personally and financially, right?

What is going to happen to the child, is he going to maintain the same standard of living, all of these questions are important.

Now, how do you address that?

So there are uh three options for a family.
First of all, they can LEAVE LEGACY TO A SIBLING who is going to take care uh for the special need uh child.

Second, they can LEAVE A LEGACY TO THE INSTITUTION who, where the child is going to reside after the parents or they can leave a LEGACY TO ANY FAMILY MEMBER identified for taking care of the special uh need child.

Now the fourth option is that LEAVING A LEGACY TO A PRIVATE FAMILY TRUST which is created for the benefit of special need child.

Now any parent has to look at all these options and see with what fits going into uh their uh requirement.

Now let’s come to a private trust, why it is required?

Now among all these, there is a big question on continuity of managing the child affairs.

For example, if you assign any individual as a legal guardian and who’s going to take care of the child after the parent’s lifetime.

Now the same question, the legal guardian will have to ask, what after me?

Who’s going to take care of the child after me or if there’s a sibling then who’s going to take care after him or her.

So, how do you answer the continuity of that managing affairs because it might be about child lifetime of 40-50 years, parents are trying to address.

So that’s where a private family trust comes in.

So a trust is formed, trustees are assigned, and the child is the beneficiary.

Now the private trust is going to remain till the child's lifetime, the trustees are going to manage the child's financial affairs.

So, a private trust answers that continuity of managing the child's financial affairs.

Now along with the private trust, what all legal documents are required?

WILL is most important, because the trust, after the parent’s lifetime will be uh transferred to the trust only through a will.

LEGAL GUARDIAN, appointing the next legal guardian is important, who’s going to take up the legal guardianship after the parents and not a legal document but uh we call it a LETTER OF INTENT or a letter of instruction, whichever way you name.

Writing a letter of intent becomes very important.

Now, what is a letter of intent?

So, let’s ask a one question that if you have to leave a child say to a neighbor for 4 hours, you can give verbal instructions, similarly, extended to 48 hours, you can still give verbal instruction, but if you are leaving your child to somebody after your lifetime, can you give verbal instruction?

This is about my child, this should not be done, this should be done…no.

For that, a letter of intent is written where you write complete about your child's life and hand it over to the stakeholders who are going to be involved with the child care.

So, Legal documents, preparing a Letter of intent, assigning Legal guardians, Writing a will and forming a Private trust, these are the four legal documents which family has to prepare.

How does one go about developing a Financial Plan for adults with disabilities?

So, there are two ways, one, they can HIRE A CONSULTANT uh who can do financial planning plus work on the legal aspects.

So if a family wants to hire a consultant they can hire a consultant who can will give them all the advice and also work on the document.

A family who cannot hire a consultant so there are two ways to do it.

One, so like our, we have a Resource website called Plan Special Needs where we have built up all the resources for the families.

It has all, for example, it has an online calculator also.

Now what is, what does this online calculator does?

Now this online calculator, uh for a family they have to put certain variables like, ‘what is the age?’ you know, ‘what is the child's age?’, ‘how much life expectancy they expect?’, ‘what is the current expenses of the child?’ based on that it gives an estimation for them, that this is the money they require for the child.

So, a family can go to our website, look at this calculator, input the variables and get the corpus required for the, for their child.

Second, they can also JOIN certain WEBINARS, education webinars which are done on financial planning which we keep on doing.

Also, if they go to our website, they will find previous webinars, okay, so that is also one.

Third, the most important resource they have, I have written a book called “Financial Planning for Families Having Children with Special Needs”, this book describe in detail, with examples and case study, how to do your financial planning, if you have a special need child

It has examples with numbers, with case studies, with charts, if any parent read that, they will, it will help them to understand the basics of how to go about doing financial planning and then they go and work on the calculators.

What steps are involved in obtaining Legal guardianship?

So, when it comes to legal guardianship, now there are again two aspects.

One, the guardianship within the child MINORITY that is before 18 years of age, and other is when the child becomes an ADULT.

Now in the eyes of law, parents are considered to be the natural guardian till the minority that means till the child turns 18 years of age, there is no need of taking any kind of guardianship.

Parents are the NATURAL GUARDIAN and can take all decisions on child behalf.

Once the child turns into an adult, then he is an adult like me and you, so he is free to take his own decisions, but because he is a special need, because he is a person with disability, so there is a SUPPORT DECISION required, for or on his behalf.

Now, if parents want to continue taking decisions on uh child behalf, once he turns 18, then they have to seek a LEGAL GUARDIANSHIP CERTIFICATE which legally authorizes them to take any decisions on the child's behalf.

Now how do you apply for the legal guardianship?

So there are four disabilities, uh autism, cerebral palsy, mental retardation (intellectual disability), multiple disabilities - if the child has any of these disabilities, then you can APPLY THROUGH THE NATIONAL TRUST.

National Trust is a body set up by the government to take care of the legal guardianship process.

So, you apply online on the National Trust, you fill up the application form, submit the required documents, you get a reference number, post that, then you are called for an assessment, there is a team sitting who uh assess the guardianship, after that assessment the legal guardianship certificate is issued.

Beyond the disability, then one has to apply uh to the court for taking a guardianship.

Do share the steps involved in obtaining a Disability Certificate and a Unique Disability ID (UDID)?

So first of all, why disability certificate is required?

See, India has a benchmark disability of 40%, it means that first of all if uh assessment the child disability is below 40%, he or she is not considered to be disabled and no disability certificate is issued.

Disability certificate is issued only when the disability is beyond 40%, above 40%.

Okay, so what is a disability certificate?

A DISABILITY CERTIFICATE is taken from a government authorized uh medical authority, okay, who issues a disability certificate certifying that the specific person has got a disability with this percentage, right?

Now how does the disability certificate is taken?

Uh either one can approach directly to the GOVERNMENT HOSPITALS in their city, or today you have a WEBSITE created by the government which is called swavalambancard.gov.in, one can apply for both disability certificate and for UDID card completely online.

Now, one can go to swavalambancard.gov.in, you select your area of hospital and you apply for the disability certificate, you get a reference number, then you approach the specific hospital, along with that reference number, they will do an assessment, and after that, they will issue the disability certificate.

Today, obviously, with UDID card coming into picture, so now directly UDID card is issued, which is a unique disability ID card or I call it, a parallel Aadhaar for person with disability.

It has all the details which is required to identify a person with disability in India.