Workshop on Trust Deed and Support Circles for special Needs

Hi All,

sharing details of another session i attended last month ……This was organized by SCAN group, they keep coming up with unique/out of the box concepts for workshops. This is one such thing, where no one has a clue before the session and end up totally amazed why the google searches did not point in this direction earlier. This session was conducted free of cost !!

Session Name – Workshop on Trust Deed and Support Circles for special Needs
Date and Time – Sunday June 15th 2019 ..2:30 pm to 5 pm.
Venue – The auditorium, Vidya Sagar School, No 1, Ranjit road, kotturpuram, Chennai
Anchor – Roma Bhagat
About Anchor – She is a senior Advocate with 30+ years standing based in New Delhi. She is an authority on legal issues for the disabled. This workshop is about how your special needs child can be made legally and financially secure and independent to the
extent possible, She will also address issues relating to formation of trusts and creation of support circles to help your child throughout his/her life.

I arrived late for the session, the introduction formalities were just got completed … Roma was about to begin her speech. Roma Bhagat herself has a disability in her eye(s). The speech was in english, however Smita from Vidyasagar was available for Tamil
Translation. Basically this session is for all the parents who asks the question ” After us what happens to my child?” targeting for parents who have an elderly special needs child. My intention of attending the session was to gain more knowledge on this aspect and guide myself and others when met with a chance.

As a parent of an elderly special needs child, the biggest question is what would happen to our kid and how to safeguard our savings for the betterment of my son after my life time. Creating a Trust is an answer to it. One can draft a Trust with their needs,
expectations, outcomes etc. and with the help of an lawyer it gets translated in to a legal framework. Roma mentioned “Drafting a trust is like writing your own biography”.

Parents began with questions at this point of time….

WHAT IS A TRUST DEED ?

Trust Deed is a document. It can have one or more trustees and they can be founders as well. Trustees are chosen to run the activities of trust and be accountable for them. Trust deed is a document whereby they setup some sort of an action plan along with financial support for a beneficiary or class of beneficiaries. It can be a one person or multiplicity of beneficiaries. For example, Special Olympics is a Trust, which is organizing sporting activities for people with metal retardation. A trust deed will basically be a life director for your child.  A Trust can be private or Public. Private trust caters to specific person. Public trust targets a section of public or Public cause at large. For example museum, is a public trust where earnings from such trust goes back in to the Trust activities, nothing will be taken out.

Why do we need Trust ? Why not Legal Guardianship ?

Legal Guardianship is restricted to a single person. Legal guardian takes over as a parent and make decisions which they seem fit.
Trust gives a structure, there is a framework in which trustees have to work. The responsibilities can be broken down further.
For example,
it your special needs person earns 10,000 rs per month and he wants to spend 3000 rs on a single night, a Legal guardian may not allow it, whereas in a trust will not make such decisions. We do not recommend Legal Guardianship, because structurally in a Trust, you can build independent decision making, which you cannot do it in a LG because it has no recognition.

Why do we need Trust ? Why not a will?

A will is an one time declaration of what needs to be done. A Trust would say, how the assets needs to be used in the trust, how the benefits of it will be used for the child etc. In what manner money will be disbursed, how many holidays/vacations in a year one can take etc. A Trust deed can be challenged a will cannot. Amendments can be made to trust. Trustees can be changed later, however will cannot be changed. It is recommended to write a will to transfer everything to a trust, after your existence.

Do we need to register a Trust Deed ?

Ideally it needs to be registered, it is valid even if it not registered, but it is not open to challenge when it is not registered.

Is there a financial advantage of having a property put in trust ?

No Financial advantage on putting a property in to a trust. Trust is taxed. It is advisable for the parent to hold the property so that independent decisions can be made on it.

If i open a trust, can anyone put money on it .. like if i am opening a trust for my kid, can my brothers, sisters, friends can add money to it?

Yes they can …

How to dissolve a trust ?

It is in the capacity of the beneficiary to be in the position, where they intellectually able to get rid of the trust. It is easy to dissolve the trust, when the disabled is evolved.

Who will appoint the Trustees or who can be Trustees ?

A Trust will typically have 4-5 people as trustees on an average… The remainder of the trustees will decide who will be appointed as next trustees. Most of the vidyasagar parents have told that they want vidyasagar to be one of their trustees for their
child in making decisions, an institution can also be a trustee.

How long does it take for a trust to comes in to existence?

2 weeks for drafting after we receive the parameters. Tt must be registered in sub registrar office which takes a day or two. Deed needs to be on 100 rs stamp paper along with a fee , photo and thumb impression , signed by witnesses.

A disabled person can be categorized in to three:

1) Not able to make Independent Decisions
2) Able to make Independent Decisions
3) Grey Area or cross over area

It is advised not to create a trust where the disabled person is capable of making independent decision. Like Smitha from Vidyasagar (She sits in wheel chair, her movements alone are restricted, however she is a perfectly capable of handling herself in every other aspect in her life). We recommend trust for disabled who cannot take care of themselves on certain key areas, where they need to be safeguarded.

Key Concept of Circles of Support / Support Circles Related :

In mainstream (i.e. ordinary people), there is a developed holistic eco system, where we make use of different services from service providers as and when required. We never saw them as a support structure needed for our day to day life. When it comes to a
disabled person, there is a gap because everything is taken care by the parent or a closely held Circle, hence the child is not independent.
For example, if you are a parent of a non verbal child, think of how many people can understand your child,  most of them would say 2 members i.e. mom and dad, if you probe yourself further, then you would think about the teacher at the school who understands him, his sibling, sometimes a neighbor or a cousin etc …. However we weren’t looking at all these people as part of our communication network earlier, this particular area triggered Roma to think about the circles of support.

The objective is to make your Special needs child independent and replace yourself as a parent with someone (caregiver) or group of people providing the services needed for your child. Our disabled wards should continue to live in an environment which is
conducive, to give them enough in terms of activity, caring and nurturing in the order they are happy.

How do we now work in replacing a parent as a medium through which a person is able to achieve all the life domains independently of the parent ?We know that we are preparing for that day !
Parent as a care giver has the love and emotion to it, whereas a mere care giver does not have that love towards the person. Emotional trauma of loosing a parent cannot be taken away, however we can focus on physiological trauma of loosing an entire life structure and care giving , that’s what we are going to talk about circles of support

Her assistant Shikar took over the presentation….He explained briefly about the classifications of 11 life domains :

1) ADL (Active and Daily Living) & Hygiene
2) Work
3) Leisure
4) Recreation and Social Engagement
5) Health and Nutrition
6) Safety
7) Communication
8) Personal Mobility
9) Transportation
10) Finances
11) Problem Solving

Shikar compared the activities that are involved in Circles of support with analogy of Project Management in IT companies. There is goal to be achieved, it is broken in to tasks, there is a time line for completing it, it involves cost, there is a deliverable.
Parents become project managers, they take charge of the children,they involve too much in the life of the children, they want to control every aspect of it. It is with our culture, we are very family bound, any crisis comes to the child, we are there, we are
so obsessed with our child, we don’t want to leave them alone, how do we work on it …?
We need to make a project shift from dependability on family to take own decisions in order to provide independence.

How many parents have left their kid alone at house. Totally alone …all by themselves?? When the parents are going to be gone  all of a sudden, what will happen to the kid ? …. There is no solution to it .. (CLAPS member spoke about the initiatives and the setup of caregivers take care of their child, parents will live in the same compound who will not be involved directly etc )

If you are living in your own with your child, is it possible for you to create an eco system that will help the disabled person to continue to stay well without the parent assistance. Can this disable kid live in the same house without the parent ..?

A Parent may have a partially disabled child, who needs assistance in ADL activities like Brushing, taking bath etc. We can have a person who shall come in and perform such activities for the disabled person, another person can come later to cook 3 meals a day
and then leave .. etc ..So you now have multiple people helping the disabled child.
There is a parent who identified 5 or 6 ward boys, who are willing to come in the morning to help on ADLs for her disabled son and then go to work .Now she is not dependent on one person, if one person is misbehaving with your disabled, you have another option.  These are options we need to create by ourselves.

When a disabled child is born in to the family, it is not the child alone who is disabled, it is parents as well who are disabled, we do not realize this. We start getting the guilt factor that we need to take care of the kid. We want to make the kids independent, what is the solution? Are you thinking of Putting your kid in hostel or retirement homes? It will make their life very mechanical and boring with the routines. Just because a kid is disabled it should not stop him from looking beyond ADL activities. Identity the problem, ascertain the current situation of the child and decide how it can be changed in next 6 or 3 months …

Supports can be classified in five ..1) Paid Support 2) Free Support 3) Constant Support 4) Intermittent Support 5) On Call Support

1) Paid Support = It can be an example of a servant who can be a live in maid or some one comes and performs the task and goes off for a sum of money.
2) Free Support – Husband makes a tea for you …! (Hoping it is a free and there is no quid pro co)
3) Constant Support = Some one who lives with the disabled person.
4) Intermittent Support = Person comes and performs service and goes away
5) On call Support = Travel to place B from Place A … You can take cab like uber or ola, or have some one drive you in your car.
These are different categories of support, each one of you have to think and create situations and support for them ..Look at all the life domains and see how it can be supported and by whom and what can be paid and what can be free….who will do it a relative or sibling or friend or neighbor, or going to be some one from institution or a teacher who really care, etc. Will i get paid support from an agency or from where ??

For example,
1) One parent spoke about ward boys, who comes and gives bath to his kid and gets him readied up, which is a paid service.
2) One parent spoke about a young village boy and brought up as a 3rd son. The boy is helping the son. It is not quite free and not quite paid as well.

For instance,
We suggested parents having non verbal child, to take your disable ward to same restaurant for 5 times in a row, instead of ordering explicitly, provide a gesture for placing an order. This gesture for idly, another gesture for dosa etc… i can guarantee in few weeks time, waiters will understand the communication of a gesture. This will happen in a span of time ….they will have a choice of what they will want to eat .. With this you added one more person on your circle of support.

Prepare a project plan, like this much of work will be done by this much of time, then we will review. We are groping in dark, we do not know what will work and what will not, however one think for sure as long as we are making experiments something will
work.

Another area that was discussed is Checks and Balances. You should have layers of protection inbuilt that helps your disabled child. For example, if your kid wanders outside your house, the neighbor is going to have an eye and report to you Your kid cannot go to upstairs unless an old lady who sits there approves it. Like these, there will be checks and balances, Some don’t work … some do work. You have to keep trying.

We need to break up the activities, instead of 1 person working 24×7, ask cousin for one help, ask a friend for another help, ask a relative to take my child for holiday. You have to expand your circle of support, ask your cousins, siblings, friends, siblings of your friends, neighbors etc. The more bigger the circle of support, the more options your child will have. You can be comfortable in sending a child for holiday with a set of 3 or 4 people, you can ask some one to take your child to doctor … some one to sit with your child for an assignment…etc. You can leave your child alone and monitor through a CCTV camera. You can get a paid companion or relative to live with them, with such experiments you can surely leave your kid for 2 days and go away.

If the disabled can use smart phone … he can order food from swiggy / zomato …. If you want a maid  to come in for cooking 3 times a day , we want to see can the disabled interact with the maid? If not, there is a problem, you can keep written flash cards with items that needs to be cooked, this address issues for the child they should not face, when you are not there ….

Roma shared an example of her friend who do not have kids, but has two dogs, due to which she does not leave the house most of the time. Even if she has to go out, it will be on a specific time … say 5-6 pm etc ….. All this is an attitude ..!! It means little bit of work, but it can happen … First time it is difficult, but it fades away in long term …

Any way some one is going to take care of your child, why not ask them to take care now in front of your eyes and judge/ascertain if they are the right person or not , that’s the point.

We had a much awaited Tea Break (In fact tea was served inside the hall, as the questions kept on coming from the parents..)

Post break Sudha a parent spoke about her experience with elder son …

The expectation is fight along, pick up a task, because the prime goal is independent living, we all are in comfort zones, everything is going on smooth until we are 60 or 70, and waiting for things to happen. We need to act now, give yourself a timeline now. i am going to leave my child all alone for a day by next month end, it all starts now, else its never gonna happen. Don’t feel like, they don’t know all this, how will they react etc .. you have to come out of your comfort zone and let them experience and learn.

There are organizations that has youth volunteers …smitha (vidya sagar) is setting up a group of volunteers from NSS as they have an mandate to spend few hours for community service.

Roma explained about a setup called Saree Library that was started in new delhi…. People who owned has very expensive wedding clothes, and does not want to wear them now, as it may be out of fashion or it is exhausted in their circles are donated here. These
sarees are cataloged, anybody can borrow these clothes for a function, by providing a deposit, they should return it after dry cleaning it and deposit is refunded. In return we are asking them to give 1 hour or 2 hours of your time on some activity for disabled persons, it makes them mutually happy the payment is not in terms of money, it may be an outing that they cannot afford etc.

Vidyasagar has a Land in karapakkam, they are going to setup residential units for disabled people not for full time stay. It is to allow the disabled person for a Short term stay to get used to living away from parents and without support of parents. This helps
in respite care and crisis in case of emergency management.

When we speak of trustee, we setup checks and balances in them .. for example, trustees will decide what is the overall income that can be spent on the disabled person. Support person and disabled person has a say that how that money will be broken out. say this
month medical checkup needs to be done, so certain amount is kept aside for the doctor expenses and remainder of the disposable income is available for spending … It is done on the regular basis.

Many Parents want vidyasagar to be involved in monitoring …monitoring services will be of 4 kinds …

1) Financial > Trustees > Vidyasagar …> Chartered Accountant will audit the trustees.. on top of it, vidyasagar will appoint an auditor to see all the trusts that are required by parents for review …
2) Physiological – everybody reacts to stress, Anxiety, BP, pulse rate, environments that are not conducive etc. decide on the interval for monitoring. If something is not inline with the parameter, it is a red flag. It could be age related or is it something more than that, does it have a natural cause or do we need to investigate further. Vidyasagar cannot look after 2000 families on a regular basis, it will focus on red flags.
3) Psychological – happy, sad abuse indicators, patterns of behavior, judge the reason for such behavior. If there is no valid reason for it, then you conduct an investigation.
4) Environmental – Random checks on people living in community, they are trained to look for sign of neglect …(water is fresh or not, clean food is there or not , is the place dirty, curtains are dropped, nails are cut, kitchen washed properly, problem in the fridge etc. Look for answers, when things are off.  Maid not available hence not swept, this is an issue that would get resolved by itself. It there is no rational reason and it is a pure neglect. Bring this issue to trust and focus on how to resolve it.

Group Home managers will be another layer in preventing misuse of funds and abuse.
They will monitor the support persons, group homes , person taken care well or not etc.
GHM will be trained by vidya sagar …they can be paid by trust or group homes put together or partly by trust and by group home. You minimize the cost by having a group home manager. Its like a maintenance fee you in your gated community . 5 group houses can appoint 1 group home manager.

In western countries, social worker concept is there, social work will come lets say change the diaper of the disabled. She will do it and leave the place and also she will look around and report his/her observations to social service. If the social worker feels that the person is not taken care well, she will report to social service .. whom will in turn visit the place and investigate and take away the person where he is taken care of better. In India all these services are provided by ourselves, as the government doesn’t provide them.

Insurance sector has been unfriendly to the disabled in India so far. They charge high premium and gives lower return, this was taken to court by Roma and court denied such practices, due to this slowly and steadily concessions are coming up for disabled people by IRDA. All insurance policies work based on data, there is a math behind it , but in case disabled people they have no data. Disabled people are more taken care of.

Think outside the box, if you are 8 families, you can join and have a trust and monitor among yourself. 2 disabled people and 4 parents can live together as a family in same house it is a support structure. You just have to explore the options.

She explained about a case law from canada,  clark vs clark:
Junior Clark had multiple disabilities, he was put in an institution, when he turned 18 years, he wanted to live in the community and leave the institution, whereas his dad is of the opinion that institution is trying to kick his son out, so he filed a suit. Judge after hearing the case gave a verdict , Jr.Clark, has a clear narrative identity and he completly
understands and aware of what he wants, he will live in the community and ruled in favor of Junior Clark.

If we really ask our disabled children and listen to them, we really do not want to put them in the institution. it should not be “i have no other option solution”. I know parents, who have parked their children in mental institutions even though they can take care of him themselves. I have no other options is a wrong decision, look for other options.

Shikar was giving Roma’s visiting card to few of the parents, she was furious(hilariously) as she has no time to attend phone calls,  after that shikar shared his contact information.

(Shikhar ….Shikhargoel@hotmail.com +91 98211 80213)

Final conclusion is to achieve to the below Ultimate goals:

1. Independent living in a shared flat or solo
2. Army of help which can be paid or unpaid
3. Portfolio management for your Trust or wealth
4. Recreational hobbies

If we start today, little by little we would be able to reach there.

A token gift (creations of Tarang) by Mr.Gopi of scan group was presented to Roma at the end.

Thank you Gopi for organizing such an event, it began the brainstroming process in most of the parents who came for the session.

Regards,
Saranya and karthik
karthiksaranyaparents@gmail.com