Beyond
A Parent’s Love: Lessons Learned in Life Planning for Special Needs Children
Minoti Rajput, a Certified
Financial Planner and Chartered Special Needs Consultant, has served as the founding
president of Secure Planning Strategies for nearly three decades. Rajput, born
and raised in India, studied finance and worked in banking before her arrival
to the United States in 1980, helping small business owners with financial
planning. In 1989 she formed her firm offering comprehensive wealth planning
with a subspecialty of life planning with financial and legal guidance to
families of special needs children. For the past 29 years her firm has
counseled 1,500+ families of children with special needs. Her thriving practice based in Michigan, also
services affluent retirees and pre-retirees, small business owners, and women
in transition. Her firm, Secure Planning Strategies, represents nearly 300
clients with $330 million in assets under management.
1.
What convinced you to devote the
last three decades of your practice to helping families, with special needs
children, plan for the future?
It was a combination of a few reasons. First, having the desire to have a
sub-specialty in my practice that was more meaningful, intellectually
challenging and emotionally satisfying. My niece with autism was often on my
mind, and the fact that I met three different families who were clueless about
their special needs child’s life after the parent’s passing. I dug deeper to find
out more about this area of planning. Once I discovered the need -- and saw a
lack of professionals specializing in special needs planning – I jumped in.
2.
Your niece was diagnosed with
autism. What fears and concerns do her parents have about their daughter’s
fate? My niece
lives in England and she receives benefits from the government and will provide
her with residential and advocacy solutions once her parents pass away. She
attends their day program currently. Her parents share the same concerns as all
my clients do. Will she get the same loving care that the parents provide? How
will she handle losing her parents? Will she be traumatized? How will her,
sister who lives in another city, manage to maintain a loving and caring
relationship with her? Will the government be able to provide good health care
under budget shortage?
3.
How do you begin the process when
working with a family that has a child with a disability, learning disorder, or
mental illness?
Many of our prospective clients approach us for consultation after attending a
special needs planning workshop we presented. We also get a fair number of
referrals. They complete a questionnaire with details of
their personal and financial information, as well as some basic information
about their child with disability. The fact-finding meeting is very important.
A deep probing into their family situation, abilities and inabilities of the
special needs child, as well as inquiries on financial matters allows us to educate the
family on special needs planning, identify planning challenges and test
possible solutions. We then offer to do their planning and help them implement
the plan. We introduce them to the attorney to complete the legal documents and
we always attend the meeting with the attorney. Once the plan is in place we
monitor it on an ongoing basis.
4.
How challenging is it to help
parents deal with the emotional side of financial planning for a child that is
likely to age with numerous difficulties? It is difficult in every case. Our message is the
importance of planning for the parents as well as for the children with
disability. The assets have to last two generation. Some families accept the
reality and do the best they can. Some have emotional reaction of sadness/
anger/ frustration. They often feel that they will never get a break. Parents
feel the pressure of lack of adequate support from the government and their own
limited ability to do the financial planning. The fear of the unknown future when
they are gone is distressing. We encourage them to do the best they can with
proper guidance.
5.
What do parents need to know about
government assistance programs?
Parents need to be educated on this very early on. They need to understand when
a child with disability can qualify for SSI, Medicaid, and many programs under
the broad umbrella of Medicaid: the qualification requirements, when to apply,
types of assistance, the agencies associated in their geographical area, the
budget challenges and how best to work with the government agencies. Government
websites, special education schools, advocacy organizations educate parents on
this matter. Parents need to be careful not to miss qualifying their child in a
timely manner at age eighteen, and plan never to have the child disqualify
either.
6.
What’s the difference between a
third-party and a first-party trust? Third-party trusts are established by the
third party, such as parents or other family members, for the benefit of a
child with a disability. It is funded with the assets of the third party.
Assets remaining in the trust after the death of the disabled person are
distributed to their heirs. First Party Trust is usually funded with the assets
of the person with a disability. It must be established and funded by a parent,
grandparent, or the guardian of the person with a disability, or by the court
for a person with a disability under the age of 65. The trust is usually
irrevocable, and the special-needs person is the only beneficiary of the trust.
The trust is usually funded with a settlement resulting from a tort action or
inheritance received by a person with a disability received inadvertently. Upon
the death of the person with a disability, the remaining assets of the trust
must be used to pay back any state medical agency providing benefits.
7.
What are some of the most important
non-legal documents that detail the appropriate needs and care instructions
required by the special-needs child?
A letter of Intent is one of the best non-legal documents created for the
special needs person. This is the document where parents describe everything in
detail about all aspects of their child. The child’s abilities, inabilities,
health issues, medications, allergies, food habits, insecurities, favorite
things, favorite person etc., In addition, it also provides instructions of how
they would like their child to be taken care of. Instructions on family visits,
recreation, medical checkups, etc. This guide is extremely important for people
who will be stepping in the parent’ shoes as trustees, advocates etc. Absence
of this document makes the caregiving very difficult and takes a toll on the
special needs child as well.
8.
What is an ABLE account and why do
you not consider it as a planning tool for the long term for a person with a
disability? ABLE
accounts allow a person with disability to have assets in their own name with
certain conditions, without jeopardizing their eligibility for government
benefits. It is however, very limited, and is not designed to provide lifelong
care supplement to the government benefits. It also has the state pay back
language.
9.
In your book, you profiled five
leaders committed to helping special needs children. What impressed you about their work? Each individual or couple has been
true advocates and they continue to make a positive difference in the lives of
those with disabilities. Some have been inspired by their own child/children’s
needs, but they have gone further and recognized the importance of serving the
disabled community at large. They continue to dedicate their time and energy in
the area of finding alternate employment, residential options, advocacy,
education as well as medical diagnosis and treatment for the disabled. They
work tirelessly and have to often deal with the government rules and budget
constraints but they continue with their mission with the hope of improving the
lives of those with special needs.
10. Having
counseled over 1,500 families nationwide with special-needs children, do you
see anything the government should be doing to ease the burden of financial
planning? The US
government, as well as the governments of other developed countries, are facing
challenges in providing services to the increasing special needs population.
Yes, the government in the US needs to provide options for planning a better
life for the longer living special needs population. Our laws are somewhat
dated and need reforms. On the other hand, taking care of a special needs child
is a partnership between the government and the families. Governments will need
to tax people more in order to have a higher budget for benefits, which is not
an option either. The government certainly needs to have more employment
opportunities for those who can work, and residential opportunities with care
giving. Families need to be strong advocates and work with the government to
provide the care and benefits for their special needs family member.
11. Why
do you hope your book inspires more financial planners to specialize in
planning for special-needs families?
I have personally experienced how families benefit from working with a
knowledgeable financial planner who can provide comprehensive planning with
focus on special needs planning. They can act as the quarterback coordinating
all aspects of the family’s planning and guide them in the needs of the special
needs child. The special needs
population is large and families need capable people to help and guide them in
taking care of their needs. Financial planning is a profession and also a
service. I hope my book demonstrates the need and also the satisfaction of
helping families that are vulnerable. It is not an easy specialization. There
is a lot to learn, but it is very rewarding.
Please
note: This author is a client for the public relations firm that I work for.
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