Milestones Magazine Winter 2023 Issue

eyond disabilities
Winter Issue 2023
ABC’s of IEP & 504 Plans
I Do... NOT Marriage Canceled
Welcome to Bankshot Sports
Competition Banned
Your Serve - Abilities Tennis
Association of North Carolina
Special Needs Trust: Join the Pool
Getting Up & Out!
GOOD
INTENTIONS
CREATING A
LETTER OF INTENT
PROJECT
PROJECTSANCTUARY

ON THE COVER
06 Your Serve -
Abilities Tennis
Association of
North Carolina
(ATANC)
09 ABC’s of IEP & 504 Plans
13 I Do... NOT Marriage Canceled
16 Welcome to Bankshots
03
GOOD
INTENTIONS
Sports Competition
Banned
17 Special Needs Trust: Join the Pool
CREATING A
LETTER OF INTENT
21 Getting Up & Out!
23
PROJECT
SANCTUARY
Publisher
Susie Redfern is the parent of a young adult on the
Autism Spectrum.
She developed Milestones Magazine to help individuals
with disabilities and their families achieve and celebrate
25
events and milestones in their lives.
info@milestonesmagazine.net
WINTER 2023
MilestonesMagazine.net
1

MY OWN PLACE
First Place-Phoenix Apartments
For many young adults, getting out
on their own is a top priority goal.
For most, the biggest (and
sometimes only) obstacle is financial.
People with divergent abilities,
however, not only have the financial
obstacle, but issues of accessibility
and supports needed to accomplish
independent living. Here is a
sampling of projects across the
U.S. that address these issues for
First Place–Phoenix Apartments
“This 81,000-square-foot supportive housing property set in
the heart of the urban region offers 55 Studio, one-, two- and
four-bedroom units for 75 residents who can access a variety
of supports and amenities with all the benefits of communityconnected,
independent living. Vocational services include
volunteer work, internships and employment. Public
transportation is within walking distance. Residents can
participate in scheduled weekly health and wellness, social, and
other activities within the property and out in the Greater Phoenix
community, which has been recognized by PBS NewsHour as
individuals looking for supportive
housing (often rental apartments).
“
the MOST
autism friendly
3
city in the WORLD
WORLD
”

MY OWN PLACE
Wynne Watts Commons
“Wynne Watts Commons is a first-of-its-kind inclusive,
accessible, affordable, and sustainable housing community.
It is located in Gresham, Oregon’s Wilkes East Neighborhood,
and is the largest net zero energy affordable housing
development in the Pacific Northwest.
The Crossings in Gaithersburg MD
“There, seven men with autism and other developmental
disabilities live in their own apartments. The building is not a
group home. It is a five-story complex with a fitness center and
a swimming pool that advertises itself to the general public as
“a brand-new affordable apartment community featuring
1-, 2- and 3-bedroom apartment homes.”
Wynne Watts Commons offers 150 affordable units of studio,
1-, 2-, and 3-bedroom apartments.
But the men’s families, through an organization called
Integrated Living Opportunities, have created a unique and
Because of Albertina Kerr’s extensive Human Services history,
the building also has 30 universally accessible units with
state-of-the-art technology and rental subsidy for people with
intellectual and developmental disabilities (I/DD), allowing
them to live more independently.”
intentional community for them. They have given them a way to
live on their own and yet never feel alone. The seven men get
together for activities, such as movie nights and workout
sessions. They have a life coach and a “community builder,”
which is a staff person who checks on each of them daily
and brings them all together weekly.
Home of Our Own (“HOOO”)
Home of Our Own (“HOOO”) is a 501(c)(3) nonprofit
established to create inclusive, affordable housing for disabled
adults through partnership with other community-based
nonprofits. HOOO began as a family-led grass roots group,
with Prairie Haus opening its doors in December 2020.
Prairie Haus provides 40 apartment homes for disabled adults,
seniors, and working adults and families struggling with the
Home of Our Own (“HOOO”)
rising cost of housing. Prairie Haus is unique because it provides
affordable homes in an integrated setting for individuals with
a wide range of support and behavioral needs, along with
welcoming and adaptive community spaces.
4

HOOO Bases Everything it Does on
Five Core Principles
MY OWN PLACE
1
2
3
4
5
No matter how challenging the disability, disabled adults should be able to live in their own
homes. Barriers based on disability are artificial, and should not prohibit someone from living
independently in their own apartment, with the right supports.
Limited income should not be a barrier to living independently, even if a person’s only
source of income is social security.
People with disabilities have the basic human right to live with all kinds of neighbors - those
of different ages, backgrounds, and family structures. They also should have the opportunity to
build friendships, develop natural supports, socialize, and engage in meaningful activities.
Disabled people should not have to leave their home community to live independently
unless they choose to.
With the right partnerships, any grassroots groups in any community in the United States
should be able to create a similar, inclusive community, so that the local need for affordable,
integrated housing can be satisfied.
M
5

Your Serve
Abilities Tennis Association
of North Carolina (ATANC)
Staying active is important for everyone, including individuals with challenges of
various kinds (physical, sensory, cognitive, etc.). Playing sports is an effective way
for people to maintain a healthy lifestyle, but people with disabilities often have
difficulty participating in sports. Adaptive sports are growing in popularity and
accessibility across the U.S. to help individuals meet these challenges. People
are often surprised to learn that tennis is a highly adaptive sport.
Tennis balls are flying all across North Carolina as more and more people embrace
the idea that tennis is for everyone. Forty-two-year-old Erin Cagle said she never
misses a chance to play tennis. “I just love to whack the tennis ball! I have been
practicing tennis every week, and right now I’m learning about hitting low to
high!” Erin is one of more than 500 athletes with intellectual disabilities who are
provided year-round tennis opportunities thanks to Abilities Tennis Association
of North Carolina (ATANC). Founded in 2007 by two parents and a tennis coach,
the goal was to create a year-round tennis program for athletes with intellectual
disabilities. Collaborating with the North Carolina Tennis Association, they
launched one clinic in the Raleigh area. Today, ATANC hosts seven tournaments
and offers free clinics and programs in almost 30 locations across the state.
Executive Director Lou Welch said the growth testifies to the important role
tennis can play in transforming the lives of individuals with intellectual disabilities.
“As with any sport, practice makes better. Abilities Tennis gives these special
athletes opportunities to practice a sport they love, improve their skills, and then
compete at their level throughout the whole year.”
Rollie Olin, an ATANC coach and parent, said, “Tennis is such a great sport.
It’s a sport for a lifetime. It’s social. It’s great exercise. The athletes truly enjoy it.”
Abilities Tennis is unique from other programs that focus on a sport during a
6

I just enjoy getting to
“practice,
come out and watch my son
improve, and play.
seasonal time frame. “In two and a half months, you’re
just getting going in a sport, whereas Abilities Tennis
takes it to a whole other level where you get to see
players and friends who you make throughout the year.
It’s a 12-month cycle, which is great.”
athlete with an intellectual disability is paired up with
a partner without an intellectual disability to play
doubles tennis. Olin said, “Unified is, I think, a step
up for the athletes because they love the opportunity to
play with folks who don’t have a disability. This is a real
opportunity for them to get to show off their skills.”
“This is our most active year yet,” said Lou Welch.
“Just since January, we have added four new clinic
locations. We’ve also been able to partner with
Please sign up for the monthly newsletter to stay
updated on program offerings, www.atanc.org.
several of our state’s college tennis teams to host our
clinics and tournaments, and we’ve engaged some of
North Carolina’s top tennis coaches to provide
highly-skilled instruction at clinics for our athletes.”
In September, ATANC hosted the state-wide Unified
Doubles Qualifier Tournament in Raleigh. The
winners of the Qualifier received an all-expenses-paid
trip to compete at the National Adaptive Tennis
ATANC also supports the inclusion of adaptive
tennis in school physical education classes through
Tournament held on the National USTA Tennis
Campus in Orlando, Florida.
its PE Abilities Tennis (PEAT) program. Initiated
in 2012 in the Wake County Public School System,
PEAT has expanded into other North Carolina cities
(most recently in Rocky Mount). The goal of PEAT is
to support each school’s efforts to provide inclusive
programming for students with intellectual disabilities.
Playing unified doubles is another way ATANC works
to promote inclusion and provide an enhanced
experience for their athletes. In unified doubles, one
“Tennis is truly a sport for everyone, from a beginning
recreational player to the highly-skilled professionals
we watch on the biggest stages. The beauty of tennis
is that there’s plenty of room in that range for athletes
with intellectual disabilities,” Welch said. And ATANC
is always excited to showcase how tennis can be
adapted so everyone can participate in the sport. In
2019, ATANC was selected by Net Generation to take
7

Tennis is such a great sport.
It’s a sport for a lifetime.
It’s social. It’s great exercise.
The athletes truly enjoy it.
”
25 Abilities Athletes to the biggest stage of tennis–the
US Open in New York City. The athletes were invited
to show off their skills and demonstrate how tennis can
be adapted for players with intellectual disabilities. It
was the first-ever such demonstration by an adaptive
program on Ashe Stadium at night.
accomplishment in having improved their skills. As
Dennis Thompson, whose son Chris has mastered a
wicked serve, said, “I just enjoy getting to come out
and watch my son practice, improve, and play.”
Rollie Olin agrees. “We all need to feel good about
ourselves, and this gives my son that. It gives him
a sense of identity. He loves seeing his friends, his
ATANC also supports the families of their athletes.
peers. He looks forward to these events like none
Parents and caregivers get a chance to see their
children pursue their interests and feel the pride of
other. Abilities Tennis truly is a blessing.”
M
8

‘s
of
&50
q & a format
Every family that enters the special education world starts with an
I.E.P., which stands for stands for Individualized Education Program).
It defines the services and accommodations to which the child is
legally entitled. It can be the source of conflict when there is
disagreement between the family and school district on what
services and accommodations are needed.
To elaborate on the topic, I am pleased to introduce Ona Krebs,
with highlights of her presentation to CHADD about ABCs of the I.E.P.,
written in a q & a format.
9

4
Question: What is an I.E.P.?
Answer: I.E.P. stands for Individualized Education Plan. An IEP
must contain information about the child and the specific
and unique educational program designed to meet their
needs. The document includes the child’s present levels
of academic achievement and functional performance
(PLAAFP), which describes in the general education
curriculum. The I.E.P. specifies goals and objectives for
the child, and includes specialized instruction, measurable
annual goals; progress reporting; special education, related
services, and supplemental aids and services; program
modifications and accommodations supports; Least
Restricted Environment statement; participation in
district - wide state tests; description of service delivery;
postsecondary transitions components, and transition
services and activities.
Question: How do I go about getting my child (age 3 or
older) tested for special education services?
Answer: Write a letter to the Director of Special Education
of your district requesting an evaluation (keep a copy for
yourself). It will take up to 30 days for a response.
Note: Once a date has been scheduled for the eval it will take
up to 60 days for the diagnosis. If you do not agree with the
districts diagnosis you can go for an out of district
evaluation at school district expense.
10

Question: How do I know if my child should be evaluated?
Answer:
Look for difficulties with academic performance (poor grades,
problems completing homework, frequent notes from teachers, etc.);
and/or social/emotional/behavioral indications (outbursts, isolation
from peers, etc.). If a child is attending public school, the teacher may
flag possible problems and refer a child for testing (parental consent is
required). Most importantly, trust your instincts. If your spidey sense
tells you something is wrong with your child’s development, it
probably is.
Question: What is a section 504 plan?
Answer: A 504 Plan, named after the Section 504 Rehabilitation Act,
ensures an individual cannot be discriminated against due to their
disability. These plans provide support and accommodations, but do
not include goals and objectives. 504 plans are reviewed periodically
based on their disability. Accommodations can include assistive
504 PLAN
technology, preferential seating, getting a list of instructions, receiving
class notes to the lesson and larger text, another set of textbooks to
keep at home, among many others. 504 plans also address
accommodations needed for health issues such as diabetes
and food allergies.
Question: What qualifies a child for special education services?
Answer: In accordance with IDEA, there are 13 categories (diagnoses)
qualifying a child for services: ADHD, Autism, Deaf-Blindness, Deafness,
Emotional Disturbance, Hearing Impairment, Intellectual Disability,
Orthopedic Impairment, Other Health Impairment (Lack of Services),
Specific Learning Disability (SLD), Speech or Language Impairment (SLI),
Traumatic Brain Injury (TBI), and Visual Impairment.
11

Question: What sort of testing/evaluation is done?
Answer: School districts typically perform a
Comprehensive Learning Assessment, which
addresses cognitive processing abilities (such as
memory, reasoning, attention, and executive
functioning). When autism is suspected, they may
do an ADOS (Autism Diagnostic Observation
Schedule) to assess communication, social
interaction, play, restrictive and repetitive behaviors.
They will also look at motor skills, social skills/
interactions, sensory processing, and
emotional/behavioral factors.
Depending on the situation, you can also
do one or more of the following: Find an
advocate, call your state Protection and
Advocacy group, find a support/parent
group for your child’s disability, file a state
complaint (Different states offer different
kinds of complaints), call your state’s
Department of Education, call the Office
of Civil Rights to make a complaint, hire
an attorney. call your local or state
governmental representative.
Question: What should a parent do when you
believe the school district is not acknowledging
your child’s difficulties or diagnosis; is not
offering sufficient services; and/or is not
Ona Krebs is an IEP Coach, based in
New York. She can be reached by phone
at 516-316-6485, on the web at
Oneilconsult.com, and email at
complying with the I.E.P. as written?
Oneilconsulting1@gmail.com.
M
Answer: Keep your communication is factual and
professional (start with the teacher and work up the
chain of command as necessary). Make sure you are
documenting everything (don’t forget to keep
a copy of each communication for yourself).
12

I Do . . .
NOT Marriage Canceled
Roughly half of all marriages fail, for many reasons.
Most divorcing parents assure their children the
marital break-up is not their fault, which of course
it isn’t. However, when parents aren’t on the same
page regarding their children (discipline, etc.)
that conflict, over time, can break up marriages.
Lynda has personal and professional experience
across a wide gamut of financial and estate
planning, including women undergoing divorce
and families needing to plan for their special needs
children. Her credentials include CFA®,
CDFA®, and ChSNC®,
Having a child with diagnosed medical or
congenital condition that has lifelong consequences
can cause much stress. Some parents come together
for these challenges; others do not. For amicably
divorcing couples who, despite their own
differences, are on the same page regarding
their children with special needs, a divorce can
be handled simply, often without the need for
lawyers and other major expenses.
Mistake #1 Accepting child support arrangements
that don’t take into consideration the financial
costs of a child with special needs. In addition,
approximately 2/3 of all states require some form
of parental financial support after the age of 18 if
the child has profound special needs. Keep careful
records of the costs of therapies, medicines, tutors,
respite care providers, wheelchairs, etc., and plan
for those beyond the age of 18, even if child
For other divorcing couples, the consequences
support is not mandated.
can be devastating, both emotionally and
financially. The stress of living and dealing with a
child who has challenges, particularly mental health
issues, increases both the rate of divorce, and the
likelihood that the divorcing couple is not on the
same page regarding the welfare and future needs
of their child. Due to the contested state of affairs
for these folks, legal dissolution of the marriage
is usually necessary.
Mistake # 2 If your child is eligible for government
entitlements to support him, do not collect child
support in the child’s name. This can make him or
her ineligible for government assistance, such as
Supplemental Security Income (SSI) or Medicaid
Waiver programs that provide services to, among
others, adults with developmental disabilities.
Instead, child supports should be directed to
the SNTs. (supplemental needs trusts)
To speak to this often-complicated situation.
I am pleased to introduce Lynda Kommel-Browne,
a financial planner, who has created a webinar titled
Divorce and the Financial Protection of Children
with Special Needs.
Mistake #3 Life Insurance snafus: If the
proceeds of a life insurance policy is intended for
the care and support of a child with a disability
(particularly after he or she turns 18), various
13

14

circumstances can derail that plan, including;
· The child with special needs is personally named as
the beneficiary. Name the SNT, not the child.
· If owner of the policy remarries, have an agreement
that the proceeds of the policy must still be for the
child with special needs, not for the new spouse.
· Whichever spouse is planning to take out the policy,
they need to confirm that they are insurable before
the divorce is finalized, not afterwards.
· Confirm that the owner and the beneficiary are the
same. The spouse taking out the insurance is the
insured. If the owner is the same person as the
beneficiary, they will be able to have visibility
around premium payments should the insured
stop making payments.
expenses” for the money (education, training, recreation,
nutritional supplements, therapy, etc. This account has
investment options. Current law specifies the age of
onset of the disability to be age 26 or earlier, Many
disabilities meet the criteria to allow an individual to open
an ABLE. (consult ABLENOW.com or Fidelity.com with
excellent ABLE account background reading) ABLE
investment accounts benefit not only from the magic of
compounded interest to grow the pot of money, but also
from their tax-free status. The money in an ABLE grows
tax free, and there are no taxes that need to be paid
upon withdrawal, as long as the money is used for a
“qualified disability expense.” They also have a checking
account option, which allows a working individual with
a disability to earn (and most importantly, save)
significantly more money on a month-to-month basis
than one limited to the asset limits imposed through
SSI or Medicaid waiver programs.
Mistake #5 Improperly handling health insurance.
Divorce decrees can specify who pays the premiums for
a child’s health insurance. Children can stay on their
parent’s health insurance until age 26. There are a few
health-insurance plans that allow for a child to stay on a
parent’s plan longer, if they are declared a “disabled adult
child” (provided premiums are paid on schedule) This
Lynda Kommel-Browne and her Family
process should be started 3-6 months before the child’s
26th birthday.
Mistake #4 Not establishing/funding an ABLE Account,
to be used for the benefit of a disabled child (particularly
when he or she reaches age 18). While ABLE accounts
are in the name of the individual with a disability, the
investment account can hold up to $100,000 without
disqualifying individuals with disabilities from receiving
government benefits such as SSI and Medicaid Waiver
programs. There are specific allowed “disability
Lynda Kommel-Browne, CFA®, CDFA®, ChSNC®,
is a Special Needs Financial Planner with
RoundRock Advisors in their Wilton CT office.
She can be reached by phone at 917-374-6948 or
email at lkommelbrowne@roundrockadvisors.com.
You can also visit her on LinkedIn or watch a
Video Recording. M
15

welcome to
Competition
Banned!
People with divergent abilities often have a difficult (at best)
time participating in recreational activities on an equal footing
with peers. Team sports, with their competitive nature (not to
mention rules), are an especial “bridge too far” for people with
developmental, cognitive, and sensory challenges. One
approach to this dilemma is taken by organizations such as
Special Olympics; but the founders/organizers of Bankshot
Sports went a different route.
The court is designed to have players shoot at an angle. It also
has a series of uniquely shaped backboards and hoops placed at
Bankshot Sports came into existence 30 years ago. Protestant
Minister James Naismith and Rabbi Dr. Reeve Brenner were
instrumental in its founding. Bankshot Sports are characterized
as Total-Mix lnclusion based on Universal Design. Bankshot
Playcourts are unique as drop-in, walk-on family sports leaving
no one marginalized to the sidelines.
8 feet. The Bankshot court helps those who are playing with
confidence, self-competitiveness, and integration. Gary,
using a wheelchair, Larry’s two kids with autism, Richard with
mobility limitations and a 90 year old grandfather are provided
with spontaneous “whenever” participation, challenging
for all ages.
Back in 2018, The National Association for Recreational Equality
hosted a non-competitive Bankshot shoot-around for those
with disabilities. This event took place in Rockville, MD, at the
Bankshot court at Mattie Stepanek Park, dedicated to those
with autism, ADHD and other challenges, along with their
References: www.dcnewsnow.com/news/local-officials-aimto-get-children-with-disabilities-more-involved-in-sports.
Contact information for Bankshot Sports:
330-U N Stonestreet Ave #504 Rockville MD 20852
800-933-0140 / 301-309-0260
families and friends.
www.bankshot.com / bankshotsports@aol.com.
M
16

Trust.
Special Needs Trust: Join the Pool
Creating a properly done special needs trust is a rather
The phrase “Trust Me” (often followed by the
sentence “What could possibly go wrong”), has
been used by people for ages, usually when they’re
complicated process that requires a specialized lawyer
(a Special Needs Trust, if not done 100% correctly, can
plunge families into a world of trouble).
trying to get someone to do an (often dangerous)
stunt of some kind.
An additional complication, for many families, is that
the amount of their assets does not lend itself to them
In this instance, however, I’m using the phrase
“Trust Me” literally, in the sense of creating a legal
trust for people with disabilities (commonly
referred to as a Special Needs Trust).
being able to justify or afford an individual special
needs trust. For them, a pooled trust can be an option.
I am pleased to introduce Harry Margolis, a Special
Needs lawyer, to speak to this subject.
To Start: Some Special Needs Trust Classification
To put pooled special needs trusts in context, there are four basic types
of special needs trusts, each with its own rules and application.
They are the following:
A third-party special needs trust created by one or more people for
A third-party pooled trust. Numerous non-profit organizations provide
1
the benefit of an individual with disabilities. These are often created by
trustee services for beneficiaries with special needs. These can be less
2
parents or grandparents for the benefit of children or grandchildren.
expensive to set up because the grantor does not need to create a
brand-new trust. They often make sense when families do not have an
A self-settled special needs trust, also called a “(d)(4)(A)” or
appropriate individual to serve as trustee and the amount in trust is
3
“pay-back” trust. These trusts are created with the beneficiary’s own
insufficient to justify the expense of hiring a professional trustee such
funds (and are sometimes referred to as the “oops” trust, if they are
as a bank, trust company, or lawyer.
used for funds coming from someone other than the beneficiary, since
such funds can go into trusts without a payback provision). To shelter
A self-settled pooled trust, also called a “(d)(4)(C).” Similar to a
funds in order that the beneficiary qualify for Medicaid or Supplemental
(d)(4)(A) trust, a (d)(4)(C) qualifies for a safe harbor in the Medicaid
4
Security Income (SSI), the trust must meet certain requirements set out
and SSI laws that permit a beneficiary to shelter their own funds and
in federal law, to which the name “(d)(4)(A)” trust refers. The name
continue to qualify for benefits. While (d)(4)(A) trusts are created for
“pay back” trust refers to one of these requirements, that upon the
individual beneficiaries, (d)(4)(C) trusts are created and managed by
beneficiary’s death the state be reimbursed from the trust for any
non-profit organizations for numerous beneficiaries.
Medicaid expenditures made on their behalf.
17

This chart should help explain
the differences among these trusts:
Third-Party Trust
Funded by the Grantor
Self-Settled Trust
Funded by the Beneficiary
Individual Special Needs Trust (d)(4)(A) Trust
Pooled Third-Party Pooled Trust (d)(4)(C) Trust
In most instances, assets in trusts created by an
applicant for SSI or Medicaid (as opposed to trusts
created by others for the applicant’s benefit) will be
counted as belonging to the individual and render
them ineligible for benefits. However, Congress
carved out two exceptions to this rule, one for
individual trusts and the other for pooled trusts
managed by non-profit organizations. The names,
(d)(4)(A) and (d)(4)(C) refer to these statutory
exceptions. While this is a federal law and each
state has its own Medicaid program, the state
Medicaid laws must comply with federal law in
order to qualify for federal cost sharing.
One main difference between (d)(4)(A) and (d)(4)(C)
trusts is that (d)(4)(A) trusts must be funded while the
beneficiary is under the age of 65 (though they
continue to be valid after the beneficiary passes that
age threshold). This is not the case with (d)(4)(C) trusts;
they can be funded at any age. However, the states
differ on whether they impose a Medicaid transfer
penalty for funding the trust after age 65. In those states
that do impose such a penalty, the fact that the trust
may be funded post-65 may be of little benefit. But in
other states that do not impose such a penalty, (d)(4)
(C) trusts are often used by nursing home residents
to shelter some funds for their needs while Medicaid
The main rules for (d)(4)(C) trusts to qualify for the safe
pays for their care.
harbor are:
a. The beneficiary must be disabled.
b. The trust must be managed by a non-profit
organization.
c. Upon the beneficiary’s death, any funds remaining
(d)(4)(C) trusts vary in what portion of the funds they
retain upon the beneficiary’s death, from none at all to
all the remaining funds. In some cases, state rules limit
the amount of funds the non-profit trustee may retain.
in trust must be paid to the state to the extent of its
Medicaid expenditures on the beneficiaries’ behalf,
except to the extent they are retained by the
non-profit organization.
18

Trust.
the services available in their state or community. They also
Benefits of (d)(4)(C) Pooled Trusts
If you or a family member have assets and need to qualify
have extensive experience working with individuals with
disabilities and are sensitive to their needs.
for SSI or Medicaid, you have a choice of sheltering those
assets by transferring them into an individual (d)(4)(A) trust
or a pooled (d)(4)(C) trust. The benefits of the latter over
the former include:
Disadvantages of (d)(4)(C) Pooled Trusts
The main disadvantage of (d)(4)(C) pooled trusts is lack
of control. The beneficiary is subject to the decisions of the
trustees in terms of trust distributions and must comply with
No need to draft a trust. Each (d)(4)(A) trust must be
drafted individually, meaning legal fees and working with
an attorney to make sure its terms are what the grantor and
beneficiary want. With (d)(4)(C) trusts, there’s a standard
trust document that governs all the individual accounts.
the trust’s procedures and systems which are created to
enable the administration of numerous accounts. They
may not fit well with the situation or needs of individual
beneficiaries. They may also be more bureaucratic than
some beneficiaries find comfortable.
The individual beneficiary need only execute standard
documents to sign on to the trust.
In some cases, the trust’s retention of funds upon the
beneficiary’s death may be seen as a disadvantage.
Ready-made trustee. One of the most difficult challenges
when creating special needs trusts is choosing the
appropriate trustee, whether a family member or a
professional. With pooled (d)(4)(C) trusts, the non-profit
organization either serves as trustee or may appoint
a board that serves in this role for all the beneficiaries.
While the state is entitled to payback of its Medicaid
expenses upon the beneficiary’s death, to the extent such
payback does not eat up all the remaining funds, they may
be distributed to family members or individuals named by
the beneficiary. If some of the funds are also kept by the
non-profit organization, it’s less likely that any will remain
for successor beneficiaries.
Available for small trusts. It can often be difficult to find a
professional trustee for smaller trusts in large part because
their fees would eat up too much of the trust principal. This
is not the case with pooled trusts, most of which will accept
accounts of any size.
Third-Party Pooled Trusts
While most non-profits that offer pooled trusts started
exclusively offering (d)(4)(C) trusts to help the populations
they serve qualify for SSI and Medicaid under the law’s
safe harbor; many have expanded to offer the same
Post-65 funding. In those states that don’t apply a
Medicaid transfer penalty, (d)(4)(C) trusts may be funded
after age 65. This is not the case with (d)(4)(A) trusts.
services for third-party trusts. Unlike (d)(4)(C) trusts,
third-party pooled trusts do not have to reimburse the state
for its Medicaid expenses on the beneficiary’s behalf upon
their death. However, the non-profit group may still require
Knowledgeable trustees. Since (d)(4)(C) pooled trusts work
with many beneficiaries with disabilities their staffs are very
a portion of the remaining funds go its coffers to help fund
the trust’s administration or for other purposes.
knowledgeable about the rules of benefit programs and
19

It often makes sense for parents or grandparents
of individuals with disabilities to take advantage of this
service when they do not have family members who
might serve as trustee or the amount of funds they are
leaving in trust are too small to justify hiring a traditional
professional trustee. In addition, if the beneficiary already
pooled-trust. This is a great starting point. However,
ask other families about their experiences with the pooled
trusts in your community. Only beneficiaries and their
families will know what it is really like to work with
particular organizations and trustees.
has an account with the non-profit organization’s (d)(4)(C)
trust, coordination may work better if the same organization
serves as trustee of the beneficiary’s third-party trust.
Harry S. Margolis practices elder law, estate and
special needs planning at Margolis Bloom & D’Agostino
in Boston and Wellesley, Massachusetts, and is a founder
Finding a Pooled Trust
The Academy of Special Needs Planners provides a
comprehensive directory of pooled disability trusts
of the Academy of Special Needs Planners. He is author
of The Baby Boomers Guide to Trusts: Your All-Purpose
Estate Planning Tool and answers consumer questions
nationwide on its website at specialneedsanswers.com/
about estate planning issues at www.AskHarry.info.
M
20

UP OUT! &
An often-expressed piece of
advice given to individuals by friends and
acquaintances is “You need to get out more”
(usually in relation to their not seeming to know
what’s going on in the world). Although being
Weller Day Boat Outings:
Individual, Small Group, Large
Group; for children/adults with life threatening
illnesses and/or disabilities, veterans and active
military personnel, and at-risk youth.
ignorant of the state of world affairs can assist
one’s mental health in some ways; getting out
and doing things in your community or elsewhere
(whether work, recreation, or other activities),
can be crucial for an individual’s physical and
mental health.
Freedom Waters Foundation has partnered with
Collier County Parks and Recreation to offer
Adaptive Sailing. The program meets at Sugden
Regional Park in Naples, weekdays on T-TH, and on
Saturdays, from Noon-3:00 PM, Oct. through April.
Program participants are invited to participate is the
The conundrum for individuals with divergent
annual Murdo Smith Adaptive Sailing Regatta.
abilities (whether due to injury, illness or a
congenital condition, meaning present at birth) is
how to do that. What supports and accommodations
are available? To speak to that, I am pleased to
introduce Freedom Waters Foundation, one of
hundreds (if not thousands) adaptive sports /
recreation programs across the country.
Freedom Waters Foundation provides free
marine-related programs for individuals with a
variety of challenges, including children with
cancer, veterans with PTSD, and people with
physical, sensory, or mental health issues.
21
18

Veterans Program: Freedom Waters Foundation
provides boating and fishing opportunities for
veterans and their family members. Veterans
Programs take place year-round in South Florida.
Annual events in Atlanta and in Indiana include
offering the opportunity for these at-risk youths to
enhance their life. At the Heels and Reels Fishing
Tournament female fishing mentors work with teen
girls; the Buoys and Bait Fishing Tournament allows
male fishing mentors to work with teen boys.
individual and small boat trips as well as Veterans
Meet-and-Greets aboard larger commercial vessels.
Freedom Waters Foundation can be contacted at
239-263-2377. Veterans who wish to participate
Fishing Programs: Freedom Waters Foundation
offers fishing opportunities for participants,
providing fishing tackle and bait. As with the
other programs, children/adults with life threatening
can complete a sign-up form online. Fishing
program participants can fill out a self-referral
form; potential fishing mentors can complete a
volunteer application.
illnesses and/or disabilities, veterans and active
military personnel can participate.
Freedom Waters Foundations depends on one-time
donations, corporate sponsorships, peer to peer
Naples, Florida Fishing Tournaments for At-risk
Youth: Fishing mentors are partnered with teens,
fundraisers, and more. You can visit the donation
page on the website for further info. M
22

GOOD INTENTIONS
CREATING A
LETTER OF INTENT
The path to a secure future
for a child with special needs
is mostly paved with financial
and legal documents and
investments, which can be
Without this otherworldly ability, how do we
convey all the intimate details required to allow
another individual to provide the quality of care
we as parents desire for our children should that
unfortunate need arise?
(sometimes must be) done
with the aid of a special-needs
lawyer or financial planner.
A Letter of Intent, sometimes called a Memorandum
of Intent, includes as much information about your
child as you can provide. This is the best way to
The Letter of Intent is
different. This one is totally
up to the parents. Basically,
ensure that the assistance and loving guidance your
child receives aligns with the standard of care you
would strive for.
it provides important details
about your child (Cliff Notes
Let’s pause to think about when this letter becomes
GOOD INTENTIONS
CREATING A LETTER OF INTENT
version) to future caregiver(s)
and is something many parents
(including yours truly)
procrastinate on. For that
reason, I am pleased to
introduce Kevne Sharpe, a
financial planner with Mariner
Wealth Advisors, to enlighten
us on what to include in a
Letter of Intent, whom it
should be provided to, when
and how to update it and more.
Any “trekkies” out there?
Remember Spock’s “mind
meld”? As a refresher, it was
a telepathic link that Vulcans,
from the original “Star Trek”
franchise, were able to create
relevant. You have recently passed, and everyone
you know is trying to process your loss. Your child
may be hardest hit. Who do they turn to? Who can
they trust? You want this important document in
the hands of that special person who is stepping up
to comfort your child and provide the support they
need. Not only would you want a new guardian to
have this letter but also other interested parties such
as siblings, grandparents, and close friends.
While not a legal document—directions in wills,
trusts and other legal documents take precedence—a
Letter of Intent will serve as the primary source of
information about your child, providing a road map
for the courts, guardians, caregivers, and others
involved in your child’s life. Once it is completed,
make sure to keep a copy of your Letter of Intent
with your estate plan documents.
with other organisms. A mind
Consider your Letter of Intent a love letter to your
meld allowed a Vulcan to know
child. It can be the greatest gift you can provide the
the innumerable details of our
new caregiver as they attempt to fill your shoes.
lives, including those as
caregivers of our children,
When starting the process of creating your Letter of
with a simple scalp massage.
Intent, you begin to realize all you do for your child.
Alas, Vulcans don’t exist, and
Don’t let the magnitude of this task cause you to
so the mind meld simply
procrastinate. As Nike’s ads advise, “Just Do It.”
remains an interesting way
to forward a sci-fi plot.
23

The Basics: Provide vital information such as your
child’s birthdate, Social Security number and
Medicaid and/or Medicare number. Indicate where
your child’s birth certificate, Social Security card,
individualized education program (IEP) files,
psychological evaluations and medical records are
located. Explain what public benefits your child
The Future: What are your dreams and hopes
for your child? What is your vision for education?
Do you see them living independently? What steps
have already been taken? If not yet employed, do you
envision they will be? If your child is on a services’
wait list, share those details. What resource
opportunities may be available in the future?
qualifies for, both through Social Security as well
as from the state for Medicaid, their value and,
importantly, how to navigate the murky waters of
special-needs planning to maintain qualification.
Share the important elements of your child’s health,
diagnosis, and medical, physical, and behavioral
therapy providers. Include where their immunization
history is, what medications are necessary, how to
obtain them and when to administer them. What
about the agencies you are aligned with that are
coordinating various support and services? Who
will be the new Social Security representative
payee? List contact information for everyone
There are no rules for this important task. Let it
take whatever form you like. (There are templates
available via a simple internet search for those who
prefer some structure in this effort.) Have this
information memorialized in writing or video and
update it periodically. Don’t keep it a secret—but
do let the people who care for you and your child
know it exists and where to find it. Spending some
time creating your Letter of Intent for your special
child will allow your voice to be clearly heard by
that generous person assuming your vital role.
All involved will be forever grateful.
involved in your child’s life and their role.
Kevne Sharpe, CFP®, ChSNC®, AEP®
The Day-to-Day: What school program and
teachers are involved? (Who is your child’s
favorite?) Do they ride the school bus? If they
are working, provide their employer’s contact
information. If you are reporting wages to Social
Security, share how that is accomplished. Do they
Wealth Advisor
Mariner Wealth Advisors
8871 Ridgeline Blvd., Ste. 100
Highlands Ranch, CO 80129
(303) 529-0024
Kevne.Sharpe@MarinerWealthAdvisors.com M
have a public transit pass and how is it renewed?
Do they find joy in having chocolate milk for
breakfast or viewing the most recent sci-fi movie?
What triggers a negative response and what has
been your calming remedy? What are your child’s
favorite foods, toys, sports teams, and songs?
Share who their friends are and how to reach them.
Do you want your child to have their faith remain
a part of their life? What does that look like?
24

PROJECT SANCTUARY
Heather Ehle, a registered nurse, founded Project Sanctuary
in 2007 to help military families upon discovering
programs and services available to them focused on the
individual service member, rather than entire families.
Service Members, spouses and children are all affected
by the stresses of military life, especially if they have
additional medical, physical, sensory, or other challenges.
The core of the program are the therapeutic retreats.
“Project Sanctuary hosts therapeutic retreats in five states
across the country that are staffed and designed by the
Certified Therapeutic Recreation Specialists (CTRS) and
the licensed counselors and social workers on Project
Sanctuary’s staff. Retreats are open to active-duty service
members and veterans of all branches of the military and
all eras. All types of families, including the LGBTQ+
community, are welcome at our retreats.”
2023 - Available Family Retreats
“Believing that military families serve together,
and they should heal together, Project Sanctuary has
Location
Dates
become the authority in providing therapeutic retreats
and delivering critical support our families need and
Stanwood WA: Warm Beach July 21-25
deserve. The result? Generational transformations.”
Jeanne Hastings, CTRS, a Milestones Magazine
contributor and creator of My Recreation Therapist,
is one of the recreation specialists who have been
involved with this organization.
M
Granby CO:
YMCA Snow Mountain Ranch
Marble Falls TX:
The Retreat at Balcones Springs
St. Simons GA:
Epworth by the Sea
Feb. 3-8, Apr. 14-19, May 12-17, June 2-7 & 9-14,
Aug. 18-23 & 15-30, Sept. 22-27, Oct. 13-18, Nov. 3-8
Mar. 10-15, Nov. 3-8
Apr. 28 - May 3, July 7-12, Oct. 20-25
NE Maryland: Sandy Cove Nov. 17-22
25

26

MILESTONES
Helping Individuals with Disabilities & their Families
Achieve & Celebrate Events & Milestones
in their Lives
Milestones Magazine – Participate with Us!
Milestones Magazine appreciates the support and participation of our partners in several ways,
including as magazine contributors. We support our magazine contributors with discounts on
advertising and the opportunity to reach our community by hosting online events and engaging in
recorded one-on-one Zoom conversations with Milestones Magazine publisher Susie Redfern.
Here are some of our articles from past issues in which the contributor voluntarily placed an ad.
(We have no requirement to advertise as a condition of becoming an article contributor).
Forest Preserve District of Will County: Nature Calls (Page 13)
Wilson’s Garden of Hope, LLC: Play with Me (Page 11)
Color-Coded Chef: Let’s Get Cooking (Page 6-8)
Color-Coded Chef: Supported Employment, Family Style
(Page 3-5)
Nancy Roach Wilder, It’s My Money (Page 24-25)
Aspiritech, Matt Hemauer, I’m on the Autism Spectrum,
Let Me TEACH YOU How to Work from Home (Page 6-7)
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