Milestones Magazine Winter 2023 Issue

Helping Individuals with Disabilities & their Families Achieve & Celebrate Events & Milestones in their Lives

Helping Individuals with Disabilities & their Families Achieve & Celebrate Events & Milestones in their Lives


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eyond disabilities<br />

<strong>Winter</strong> <strong>Issue</strong> <strong>2023</strong><br />

ABC’s of IEP & 504 Plans<br />

I Do... NOT Marriage Canceled<br />

Welcome to Bankshot Sports<br />

Competition Banned<br />

Your Serve - Abilities Tennis<br />

Association of North Carolina<br />

Special Needs Trust: Join the Pool<br />

Getting Up & Out!<br />

GOOD<br />







06 Your Serve -<br />

Abilities Tennis<br />

Association of<br />

North Carolina<br />

(ATANC)<br />

09 ABC’s of IEP & 504 Plans<br />

13 I Do... NOT Marriage Canceled<br />

16 Welcome to Bankshots<br />

03<br />

GOOD<br />


Sports Competition<br />

Banned<br />

17 Special Needs Trust: Join the Pool<br />



21 Getting Up & Out!<br />

23<br />



Publisher<br />

Susie Redfern is the parent of a young adult on the<br />

Autism Spectrum.<br />

She developed <strong>Milestones</strong> <strong>Magazine</strong> to help individuals<br />

with disabilities and their families achieve and celebrate<br />

25<br />

events and milestones in their lives.<br />

info@milestonesmagazine.net<br />

WINTER <strong>2023</strong><br />

<strong>Milestones</strong><strong>Magazine</strong>.net<br />



First Place-Phoenix Apartments<br />

For many young adults, getting out<br />

on their own is a top priority goal.<br />

For most, the biggest (and<br />

sometimes only) obstacle is financial.<br />

People with divergent abilities,<br />

however, not only have the financial<br />

obstacle, but issues of accessibility<br />

and supports needed to accomplish<br />

independent living. Here is a<br />

sampling of projects across the<br />

U.S. that address these issues for<br />

First Place–Phoenix Apartments<br />

“This 81,000-square-foot supportive housing property set in<br />

the heart of the urban region offers 55 Studio, one-, two- and<br />

four-bedroom units for 75 residents who can access a variety<br />

of supports and amenities with all the benefits of communityconnected,<br />

independent living. Vocational services include<br />

volunteer work, internships and employment. Public<br />

transportation is within walking distance. Residents can<br />

participate in scheduled weekly health and wellness, social, and<br />

other activities within the property and out in the Greater Phoenix<br />

community, which has been recognized by PBS NewsHour as<br />

individuals looking for supportive<br />

housing (often rental apartments).<br />

“<br />

the MOST<br />

autism friendly<br />

3<br />

city in the WORLD<br />

WORLD<br />


Wynne Watts Commons<br />

“Wynne Watts Commons is a first-of-its-kind inclusive,<br />

accessible, affordable, and sustainable housing community.<br />

It is located in Gresham, Oregon’s Wilkes East Neighborhood,<br />

and is the largest net zero energy affordable housing<br />

development in the Pacific Northwest.<br />

The Crossings in Gaithersburg MD<br />

“There, seven men with autism and other developmental<br />

disabilities live in their own apartments. The building is not a<br />

group home. It is a five-story complex with a fitness center and<br />

a swimming pool that advertises itself to the general public as<br />

“a brand-new affordable apartment community featuring<br />

1-, 2- and 3-bedroom apartment homes.”<br />

Wynne Watts Commons offers 150 affordable units of studio,<br />

1-, 2-, and 3-bedroom apartments.<br />

But the men’s families, through an organization called<br />

Integrated Living Opportunities, have created a unique and<br />

Because of Albertina Kerr’s extensive Human Services history,<br />

the building also has 30 universally accessible units with<br />

state-of-the-art technology and rental subsidy for people with<br />

intellectual and developmental disabilities (I/DD), allowing<br />

them to live more independently.”<br />

intentional community for them. They have given them a way to<br />

live on their own and yet never feel alone. The seven men get<br />

together for activities, such as movie nights and workout<br />

sessions. They have a life coach and a “community builder,”<br />

which is a staff person who checks on each of them daily<br />

and brings them all together weekly.<br />

Home of Our Own (“HOOO”)<br />

Home of Our Own (“HOOO”) is a 501(c)(3) nonprofit<br />

established to create inclusive, affordable housing for disabled<br />

adults through partnership with other community-based<br />

nonprofits. HOOO began as a family-led grass roots group,<br />

with Prairie Haus opening its doors in December 2020.<br />

Prairie Haus provides 40 apartment homes for disabled adults,<br />

seniors, and working adults and families struggling with the<br />

Home of Our Own (“HOOO”)<br />

rising cost of housing. Prairie Haus is unique because it provides<br />

affordable homes in an integrated setting for individuals with<br />

a wide range of support and behavioral needs, along with<br />

welcoming and adaptive community spaces.<br />


HOOO Bases Everything it Does on<br />

Five Core Principles<br />


1<br />

2<br />

3<br />

4<br />

5<br />

No matter how challenging the disability, disabled adults should be able to live in their own<br />

homes. Barriers based on disability are artificial, and should not prohibit someone from living<br />

independently in their own apartment, with the right supports.<br />

Limited income should not be a barrier to living independently, even if a person’s only<br />

source of income is social security.<br />

People with disabilities have the basic human right to live with all kinds of neighbors - those<br />

of different ages, backgrounds, and family structures. They also should have the opportunity to<br />

build friendships, develop natural supports, socialize, and engage in meaningful activities.<br />

Disabled people should not have to leave their home community to live independently<br />

unless they choose to.<br />

With the right partnerships, any grassroots groups in any community in the United States<br />

should be able to create a similar, inclusive community, so that the local need for affordable,<br />

integrated housing can be satisfied.<br />

M<br />


Your Serve<br />

Abilities Tennis Association<br />

of North Carolina (ATANC)<br />

Staying active is important for everyone, including individuals with challenges of<br />

various kinds (physical, sensory, cognitive, etc.). Playing sports is an effective way<br />

for people to maintain a healthy lifestyle, but people with disabilities often have<br />

difficulty participating in sports. Adaptive sports are growing in popularity and<br />

accessibility across the U.S. to help individuals meet these challenges. People<br />

are often surprised to learn that tennis is a highly adaptive sport.<br />

Tennis balls are flying all across North Carolina as more and more people embrace<br />

the idea that tennis is for everyone. Forty-two-year-old Erin Cagle said she never<br />

misses a chance to play tennis. “I just love to whack the tennis ball! I have been<br />

practicing tennis every week, and right now I’m learning about hitting low to<br />

high!” Erin is one of more than 500 athletes with intellectual disabilities who are<br />

provided year-round tennis opportunities thanks to Abilities Tennis Association<br />

of North Carolina (ATANC). Founded in 2007 by two parents and a tennis coach,<br />

the goal was to create a year-round tennis program for athletes with intellectual<br />

disabilities. Collaborating with the North Carolina Tennis Association, they<br />

launched one clinic in the Raleigh area. Today, ATANC hosts seven tournaments<br />

and offers free clinics and programs in almost 30 locations across the state.<br />

Executive Director Lou Welch said the growth testifies to the important role<br />

tennis can play in transforming the lives of individuals with intellectual disabilities.<br />

“As with any sport, practice makes better. Abilities Tennis gives these special<br />

athletes opportunities to practice a sport they love, improve their skills, and then<br />

compete at their level throughout the whole year.”<br />

Rollie Olin, an ATANC coach and parent, said, “Tennis is such a great sport.<br />

It’s a sport for a lifetime. It’s social. It’s great exercise. The athletes truly enjoy it.”<br />

Abilities Tennis is unique from other programs that focus on a sport during a<br />


I just enjoy getting to<br />

“practice,<br />

come out and watch my son<br />

improve, and play.<br />

seasonal time frame. “In two and a half months, you’re<br />

just getting going in a sport, whereas Abilities Tennis<br />

takes it to a whole other level where you get to see<br />

players and friends who you make throughout the year.<br />

It’s a 12-month cycle, which is great.”<br />

athlete with an intellectual disability is paired up with<br />

a partner without an intellectual disability to play<br />

doubles tennis. Olin said, “Unified is, I think, a step<br />

up for the athletes because they love the opportunity to<br />

play with folks who don’t have a disability. This is a real<br />

opportunity for them to get to show off their skills.”<br />

“This is our most active year yet,” said Lou Welch.<br />

“Just since January, we have added four new clinic<br />

locations. We’ve also been able to partner with<br />

Please sign up for the monthly newsletter to stay<br />

updated on program offerings, www.atanc.org.<br />

several of our state’s college tennis teams to host our<br />

clinics and tournaments, and we’ve engaged some of<br />

North Carolina’s top tennis coaches to provide<br />

highly-skilled instruction at clinics for our athletes.”<br />

In September, ATANC hosted the state-wide Unified<br />

Doubles Qualifier Tournament in Raleigh. The<br />

winners of the Qualifier received an all-expenses-paid<br />

trip to compete at the National Adaptive Tennis<br />

ATANC also supports the inclusion of adaptive<br />

tennis in school physical education classes through<br />

Tournament held on the National USTA Tennis<br />

Campus in Orlando, Florida.<br />

its PE Abilities Tennis (PEAT) program. Initiated<br />

in 2012 in the Wake County Public School System,<br />

PEAT has expanded into other North Carolina cities<br />

(most recently in Rocky Mount). The goal of PEAT is<br />

to support each school’s efforts to provide inclusive<br />

programming for students with intellectual disabilities.<br />

Playing unified doubles is another way ATANC works<br />

to promote inclusion and provide an enhanced<br />

experience for their athletes. In unified doubles, one<br />

“Tennis is truly a sport for everyone, from a beginning<br />

recreational player to the highly-skilled professionals<br />

we watch on the biggest stages. The beauty of tennis<br />

is that there’s plenty of room in that range for athletes<br />

with intellectual disabilities,” Welch said. And ATANC<br />

is always excited to showcase how tennis can be<br />

adapted so everyone can participate in the sport. In<br />

2019, ATANC was selected by Net Generation to take<br />


Tennis is such a great sport.<br />

It’s a sport for a lifetime.<br />

It’s social. It’s great exercise.<br />

The athletes truly enjoy it.<br />

”<br />

25 Abilities Athletes to the biggest stage of tennis–the<br />

US Open in New York City. The athletes were invited<br />

to show off their skills and demonstrate how tennis can<br />

be adapted for players with intellectual disabilities. It<br />

was the first-ever such demonstration by an adaptive<br />

program on Ashe Stadium at night.<br />

accomplishment in having improved their skills. As<br />

Dennis Thompson, whose son Chris has mastered a<br />

wicked serve, said, “I just enjoy getting to come out<br />

and watch my son practice, improve, and play.”<br />

Rollie Olin agrees. “We all need to feel good about<br />

ourselves, and this gives my son that. It gives him<br />

a sense of identity. He loves seeing his friends, his<br />

ATANC also supports the families of their athletes.<br />

peers. He looks forward to these events like none<br />

Parents and caregivers get a chance to see their<br />

children pursue their interests and feel the pride of<br />

other. Abilities Tennis truly is a blessing.”<br />

M<br />


‘s<br />

of<br />

&50<br />

q & a format<br />

Every family that enters the special education world starts with an<br />

I.E.P., which stands for stands for Individualized Education Program).<br />

It defines the services and accommodations to which the child is<br />

legally entitled. It can be the source of conflict when there is<br />

disagreement between the family and school district on what<br />

services and accommodations are needed.<br />

To elaborate on the topic, I am pleased to introduce Ona Krebs,<br />

with highlights of her presentation to CHADD about ABCs of the I.E.P.,<br />

written in a q & a format.<br />


4<br />

Question: What is an I.E.P.?<br />

Answer: I.E.P. stands for Individualized Education Plan. An IEP<br />

must contain information about the child and the specific<br />

and unique educational program designed to meet their<br />

needs. The document includes the child’s present levels<br />

of academic achievement and functional performance<br />

(PLAAFP), which describes in the general education<br />

curriculum. The I.E.P. specifies goals and objectives for<br />

the child, and includes specialized instruction, measurable<br />

annual goals; progress reporting; special education, related<br />

services, and supplemental aids and services; program<br />

modifications and accommodations supports; Least<br />

Restricted Environment statement; participation in<br />

district - wide state tests; description of service delivery;<br />

postsecondary transitions components, and transition<br />

services and activities.<br />

Question: How do I go about getting my child (age 3 or<br />

older) tested for special education services?<br />

Answer: Write a letter to the Director of Special Education<br />

of your district requesting an evaluation (keep a copy for<br />

yourself). It will take up to 30 days for a response.<br />

Note: Once a date has been scheduled for the eval it will take<br />

up to 60 days for the diagnosis. If you do not agree with the<br />

districts diagnosis you can go for an out of district<br />

evaluation at school district expense.<br />


Question: How do I know if my child should be evaluated?<br />

Answer:<br />

Look for difficulties with academic performance (poor grades,<br />

problems completing homework, frequent notes from teachers, etc.);<br />

and/or social/emotional/behavioral indications (outbursts, isolation<br />

from peers, etc.). If a child is attending public school, the teacher may<br />

flag possible problems and refer a child for testing (parental consent is<br />

required). Most importantly, trust your instincts. If your spidey sense<br />

tells you something is wrong with your child’s development, it<br />

probably is.<br />

Question: What is a section 504 plan?<br />

Answer: A 504 Plan, named after the Section 504 Rehabilitation Act,<br />

ensures an individual cannot be discriminated against due to their<br />

disability. These plans provide support and accommodations, but do<br />

not include goals and objectives. 504 plans are reviewed periodically<br />

based on their disability. Accommodations can include assistive<br />

504 PLAN<br />

technology, preferential seating, getting a list of instructions, receiving<br />

class notes to the lesson and larger text, another set of textbooks to<br />

keep at home, among many others. 504 plans also address<br />

accommodations needed for health issues such as diabetes<br />

and food allergies.<br />

Question: What qualifies a child for special education services?<br />

Answer: In accordance with IDEA, there are 13 categories (diagnoses)<br />

qualifying a child for services: ADHD, Autism, Deaf-Blindness, Deafness,<br />

Emotional Disturbance, Hearing Impairment, Intellectual Disability,<br />

Orthopedic Impairment, Other Health Impairment (Lack of Services),<br />

Specific Learning Disability (SLD), Speech or Language Impairment (SLI),<br />

Traumatic Brain Injury (TBI), and Visual Impairment.<br />


Question: What sort of testing/evaluation is done?<br />

Answer: School districts typically perform a<br />

Comprehensive Learning Assessment, which<br />

addresses cognitive processing abilities (such as<br />

memory, reasoning, attention, and executive<br />

functioning). When autism is suspected, they may<br />

do an ADOS (Autism Diagnostic Observation<br />

Schedule) to assess communication, social<br />

interaction, play, restrictive and repetitive behaviors.<br />

They will also look at motor skills, social skills/<br />

interactions, sensory processing, and<br />

emotional/behavioral factors.<br />

Depending on the situation, you can also<br />

do one or more of the following: Find an<br />

advocate, call your state Protection and<br />

Advocacy group, find a support/parent<br />

group for your child’s disability, file a state<br />

complaint (Different states offer different<br />

kinds of complaints), call your state’s<br />

Department of Education, call the Office<br />

of Civil Rights to make a complaint, hire<br />

an attorney. call your local or state<br />

governmental representative.<br />

Question: What should a parent do when you<br />

believe the school district is not acknowledging<br />

your child’s difficulties or diagnosis; is not<br />

offering sufficient services; and/or is not<br />

Ona Krebs is an IEP Coach, based in<br />

New York. She can be reached by phone<br />

at 516-316-6485, on the web at<br />

Oneilconsult.com, and email at<br />

complying with the I.E.P. as written?<br />

Oneilconsulting1@gmail.com.<br />

M<br />

Answer: Keep your communication is factual and<br />

professional (start with the teacher and work up the<br />

chain of command as necessary). Make sure you are<br />

documenting everything (don’t forget to keep<br />

a copy of each communication for yourself).<br />


I Do . . .<br />

NOT Marriage Canceled<br />

Roughly half of all marriages fail, for many reasons.<br />

Most divorcing parents assure their children the<br />

marital break-up is not their fault, which of course<br />

it isn’t. However, when parents aren’t on the same<br />

page regarding their children (discipline, etc.)<br />

that conflict, over time, can break up marriages.<br />

Lynda has personal and professional experience<br />

across a wide gamut of financial and estate<br />

planning, including women undergoing divorce<br />

and families needing to plan for their special needs<br />

children. Her credentials include CFA®,<br />

CDFA®, and ChSNC®,<br />

Having a child with diagnosed medical or<br />

congenital condition that has lifelong consequences<br />

can cause much stress. Some parents come together<br />

for these challenges; others do not. For amicably<br />

divorcing couples who, despite their own<br />

differences, are on the same page regarding<br />

their children with special needs, a divorce can<br />

be handled simply, often without the need for<br />

lawyers and other major expenses.<br />

Mistake #1 Accepting child support arrangements<br />

that don’t take into consideration the financial<br />

costs of a child with special needs. In addition,<br />

approximately 2/3 of all states require some form<br />

of parental financial support after the age of 18 if<br />

the child has profound special needs. Keep careful<br />

records of the costs of therapies, medicines, tutors,<br />

respite care providers, wheelchairs, etc., and plan<br />

for those beyond the age of 18, even if child<br />

For other divorcing couples, the consequences<br />

support is not mandated.<br />

can be devastating, both emotionally and<br />

financially. The stress of living and dealing with a<br />

child who has challenges, particularly mental health<br />

issues, increases both the rate of divorce, and the<br />

likelihood that the divorcing couple is not on the<br />

same page regarding the welfare and future needs<br />

of their child. Due to the contested state of affairs<br />

for these folks, legal dissolution of the marriage<br />

is usually necessary.<br />

Mistake # 2 If your child is eligible for government<br />

entitlements to support him, do not collect child<br />

support in the child’s name. This can make him or<br />

her ineligible for government assistance, such as<br />

Supplemental Security Income (SSI) or Medicaid<br />

Waiver programs that provide services to, among<br />

others, adults with developmental disabilities.<br />

Instead, child supports should be directed to<br />

the SNTs. (supplemental needs trusts)<br />

To speak to this often-complicated situation.<br />

I am pleased to introduce Lynda Kommel-Browne,<br />

a financial planner, who has created a webinar titled<br />

Divorce and the Financial Protection of Children<br />

with Special Needs.<br />

Mistake #3 Life Insurance snafus: If the<br />

proceeds of a life insurance policy is intended for<br />

the care and support of a child with a disability<br />

(particularly after he or she turns 18), various<br />



circumstances can derail that plan, including;<br />

· The child with special needs is personally named as<br />

the beneficiary. Name the SNT, not the child.<br />

· If owner of the policy remarries, have an agreement<br />

that the proceeds of the policy must still be for the<br />

child with special needs, not for the new spouse.<br />

· Whichever spouse is planning to take out the policy,<br />

they need to confirm that they are insurable before<br />

the divorce is finalized, not afterwards.<br />

· Confirm that the owner and the beneficiary are the<br />

same. The spouse taking out the insurance is the<br />

insured. If the owner is the same person as the<br />

beneficiary, they will be able to have visibility<br />

around premium payments should the insured<br />

stop making payments.<br />

expenses” for the money (education, training, recreation,<br />

nutritional supplements, therapy, etc. This account has<br />

investment options. Current law specifies the age of<br />

onset of the disability to be age 26 or earlier, Many<br />

disabilities meet the criteria to allow an individual to open<br />

an ABLE. (consult ABLENOW.com or Fidelity.com with<br />

excellent ABLE account background reading) ABLE<br />

investment accounts benefit not only from the magic of<br />

compounded interest to grow the pot of money, but also<br />

from their tax-free status. The money in an ABLE grows<br />

tax free, and there are no taxes that need to be paid<br />

upon withdrawal, as long as the money is used for a<br />

“qualified disability expense.” They also have a checking<br />

account option, which allows a working individual with<br />

a disability to earn (and most importantly, save)<br />

significantly more money on a month-to-month basis<br />

than one limited to the asset limits imposed through<br />

SSI or Medicaid waiver programs.<br />

Mistake #5 Improperly handling health insurance.<br />

Divorce decrees can specify who pays the premiums for<br />

a child’s health insurance. Children can stay on their<br />

parent’s health insurance until age 26. There are a few<br />

health-insurance plans that allow for a child to stay on a<br />

parent’s plan longer, if they are declared a “disabled adult<br />

child” (provided premiums are paid on schedule) This<br />

Lynda Kommel-Browne and her Family<br />

process should be started 3-6 months before the child’s<br />

26th birthday.<br />

Mistake #4 Not establishing/funding an ABLE Account,<br />

to be used for the benefit of a disabled child (particularly<br />

when he or she reaches age 18). While ABLE accounts<br />

are in the name of the individual with a disability, the<br />

investment account can hold up to $100,000 without<br />

disqualifying individuals with disabilities from receiving<br />

government benefits such as SSI and Medicaid Waiver<br />

programs. There are specific allowed “disability<br />

Lynda Kommel-Browne, CFA®, CDFA®, ChSNC®,<br />

is a Special Needs Financial Planner with<br />

RoundRock Advisors in their Wilton CT office.<br />

She can be reached by phone at 917-374-6948 or<br />

email at lkommelbrowne@roundrockadvisors.com.<br />

You can also visit her on LinkedIn or watch a<br />

Video Recording. M<br />


welcome to<br />

Competition<br />

Banned!<br />

People with divergent abilities often have a difficult (at best)<br />

time participating in recreational activities on an equal footing<br />

with peers. Team sports, with their competitive nature (not to<br />

mention rules), are an especial “bridge too far” for people with<br />

developmental, cognitive, and sensory challenges. One<br />

approach to this dilemma is taken by organizations such as<br />

Special Olympics; but the founders/organizers of Bankshot<br />

Sports went a different route.<br />

The court is designed to have players shoot at an angle. It also<br />

has a series of uniquely shaped backboards and hoops placed at<br />

Bankshot Sports came into existence 30 years ago. Protestant<br />

Minister James Naismith and Rabbi Dr. Reeve Brenner were<br />

instrumental in its founding. Bankshot Sports are characterized<br />

as Total-Mix lnclusion based on Universal Design. Bankshot<br />

Playcourts are unique as drop-in, walk-on family sports leaving<br />

no one marginalized to the sidelines.<br />

8 feet. The Bankshot court helps those who are playing with<br />

confidence, self-competitiveness, and integration. Gary,<br />

using a wheelchair, Larry’s two kids with autism, Richard with<br />

mobility limitations and a 90 year old grandfather are provided<br />

with spontaneous “whenever” participation, challenging<br />

for all ages.<br />

Back in 2018, The National Association for Recreational Equality<br />

hosted a non-competitive Bankshot shoot-around for those<br />

with disabilities. This event took place in Rockville, MD, at the<br />

Bankshot court at Mattie Stepanek Park, dedicated to those<br />

with autism, ADHD and other challenges, along with their<br />

References: www.dcnewsnow.com/news/local-officials-aimto-get-children-with-disabilities-more-involved-in-sports.<br />

Contact information for Bankshot Sports:<br />

330-U N Stonestreet Ave #504 Rockville MD 20852<br />

800-933-0140 / 301-309-0260<br />

families and friends.<br />

www.bankshot.com / bankshotsports@aol.com.<br />

M<br />


Trust.<br />

Special Needs Trust: Join the Pool<br />

Creating a properly done special needs trust is a rather<br />

The phrase “Trust Me” (often followed by the<br />

sentence “What could possibly go wrong”), has<br />

been used by people for ages, usually when they’re<br />

complicated process that requires a specialized lawyer<br />

(a Special Needs Trust, if not done 100% correctly, can<br />

plunge families into a world of trouble).<br />

trying to get someone to do an (often dangerous)<br />

stunt of some kind.<br />

An additional complication, for many families, is that<br />

the amount of their assets does not lend itself to them<br />

In this instance, however, I’m using the phrase<br />

“Trust Me” literally, in the sense of creating a legal<br />

trust for people with disabilities (commonly<br />

referred to as a Special Needs Trust).<br />

being able to justify or afford an individual special<br />

needs trust. For them, a pooled trust can be an option.<br />

I am pleased to introduce Harry Margolis, a Special<br />

Needs lawyer, to speak to this subject.<br />

To Start: Some Special Needs Trust Classification<br />

To put pooled special needs trusts in context, there are four basic types<br />

of special needs trusts, each with its own rules and application.<br />

They are the following:<br />

A third-party special needs trust created by one or more people for<br />

A third-party pooled trust. Numerous non-profit organizations provide<br />

1<br />

the benefit of an individual with disabilities. These are often created by<br />

trustee services for beneficiaries with special needs. These can be less<br />

2<br />

parents or grandparents for the benefit of children or grandchildren.<br />

expensive to set up because the grantor does not need to create a<br />

brand-new trust. They often make sense when families do not have an<br />

A self-settled special needs trust, also called a “(d)(4)(A)” or<br />

appropriate individual to serve as trustee and the amount in trust is<br />

3<br />

“pay-back” trust. These trusts are created with the beneficiary’s own<br />

insufficient to justify the expense of hiring a professional trustee such<br />

funds (and are sometimes referred to as the “oops” trust, if they are<br />

as a bank, trust company, or lawyer.<br />

used for funds coming from someone other than the beneficiary, since<br />

such funds can go into trusts without a payback provision). To shelter<br />

A self-settled pooled trust, also called a “(d)(4)(C).” Similar to a<br />

funds in order that the beneficiary qualify for Medicaid or Supplemental<br />

(d)(4)(A) trust, a (d)(4)(C) qualifies for a safe harbor in the Medicaid<br />

4<br />

Security Income (SSI), the trust must meet certain requirements set out<br />

and SSI laws that permit a beneficiary to shelter their own funds and<br />

in federal law, to which the name “(d)(4)(A)” trust refers. The name<br />

continue to qualify for benefits. While (d)(4)(A) trusts are created for<br />

“pay back” trust refers to one of these requirements, that upon the<br />

individual beneficiaries, (d)(4)(C) trusts are created and managed by<br />

beneficiary’s death the state be reimbursed from the trust for any<br />

non-profit organizations for numerous beneficiaries.<br />

Medicaid expenditures made on their behalf.<br />


This chart should help explain<br />

the differences among these trusts:<br />

Third-Party Trust<br />

Funded by the Grantor<br />

Self-Settled Trust<br />

Funded by the Beneficiary<br />

Individual Special Needs Trust (d)(4)(A) Trust<br />

Pooled Third-Party Pooled Trust (d)(4)(C) Trust<br />

In most instances, assets in trusts created by an<br />

applicant for SSI or Medicaid (as opposed to trusts<br />

created by others for the applicant’s benefit) will be<br />

counted as belonging to the individual and render<br />

them ineligible for benefits. However, Congress<br />

carved out two exceptions to this rule, one for<br />

individual trusts and the other for pooled trusts<br />

managed by non-profit organizations. The names,<br />

(d)(4)(A) and (d)(4)(C) refer to these statutory<br />

exceptions. While this is a federal law and each<br />

state has its own Medicaid program, the state<br />

Medicaid laws must comply with federal law in<br />

order to qualify for federal cost sharing.<br />

One main difference between (d)(4)(A) and (d)(4)(C)<br />

trusts is that (d)(4)(A) trusts must be funded while the<br />

beneficiary is under the age of 65 (though they<br />

continue to be valid after the beneficiary passes that<br />

age threshold). This is not the case with (d)(4)(C) trusts;<br />

they can be funded at any age. However, the states<br />

differ on whether they impose a Medicaid transfer<br />

penalty for funding the trust after age 65. In those states<br />

that do impose such a penalty, the fact that the trust<br />

may be funded post-65 may be of little benefit. But in<br />

other states that do not impose such a penalty, (d)(4)<br />

(C) trusts are often used by nursing home residents<br />

to shelter some funds for their needs while Medicaid<br />

The main rules for (d)(4)(C) trusts to qualify for the safe<br />

pays for their care.<br />

harbor are:<br />

a. The beneficiary must be disabled.<br />

b. The trust must be managed by a non-profit<br />

organization.<br />

c. Upon the beneficiary’s death, any funds remaining<br />

(d)(4)(C) trusts vary in what portion of the funds they<br />

retain upon the beneficiary’s death, from none at all to<br />

all the remaining funds. In some cases, state rules limit<br />

the amount of funds the non-profit trustee may retain.<br />

in trust must be paid to the state to the extent of its<br />

Medicaid expenditures on the beneficiaries’ behalf,<br />

except to the extent they are retained by the<br />

non-profit organization.<br />


Trust.<br />

the services available in their state or community. They also<br />

Benefits of (d)(4)(C) Pooled Trusts<br />

If you or a family member have assets and need to qualify<br />

have extensive experience working with individuals with<br />

disabilities and are sensitive to their needs.<br />

for SSI or Medicaid, you have a choice of sheltering those<br />

assets by transferring them into an individual (d)(4)(A) trust<br />

or a pooled (d)(4)(C) trust. The benefits of the latter over<br />

the former include:<br />

Disadvantages of (d)(4)(C) Pooled Trusts<br />

The main disadvantage of (d)(4)(C) pooled trusts is lack<br />

of control. The beneficiary is subject to the decisions of the<br />

trustees in terms of trust distributions and must comply with<br />

No need to draft a trust. Each (d)(4)(A) trust must be<br />

drafted individually, meaning legal fees and working with<br />

an attorney to make sure its terms are what the grantor and<br />

beneficiary want. With (d)(4)(C) trusts, there’s a standard<br />

trust document that governs all the individual accounts.<br />

the trust’s procedures and systems which are created to<br />

enable the administration of numerous accounts. They<br />

may not fit well with the situation or needs of individual<br />

beneficiaries. They may also be more bureaucratic than<br />

some beneficiaries find comfortable.<br />

The individual beneficiary need only execute standard<br />

documents to sign on to the trust.<br />

In some cases, the trust’s retention of funds upon the<br />

beneficiary’s death may be seen as a disadvantage.<br />

Ready-made trustee. One of the most difficult challenges<br />

when creating special needs trusts is choosing the<br />

appropriate trustee, whether a family member or a<br />

professional. With pooled (d)(4)(C) trusts, the non-profit<br />

organization either serves as trustee or may appoint<br />

a board that serves in this role for all the beneficiaries.<br />

While the state is entitled to payback of its Medicaid<br />

expenses upon the beneficiary’s death, to the extent such<br />

payback does not eat up all the remaining funds, they may<br />

be distributed to family members or individuals named by<br />

the beneficiary. If some of the funds are also kept by the<br />

non-profit organization, it’s less likely that any will remain<br />

for successor beneficiaries.<br />

Available for small trusts. It can often be difficult to find a<br />

professional trustee for smaller trusts in large part because<br />

their fees would eat up too much of the trust principal. This<br />

is not the case with pooled trusts, most of which will accept<br />

accounts of any size.<br />

Third-Party Pooled Trusts<br />

While most non-profits that offer pooled trusts started<br />

exclusively offering (d)(4)(C) trusts to help the populations<br />

they serve qualify for SSI and Medicaid under the law’s<br />

safe harbor; many have expanded to offer the same<br />

Post-65 funding. In those states that don’t apply a<br />

Medicaid transfer penalty, (d)(4)(C) trusts may be funded<br />

after age 65. This is not the case with (d)(4)(A) trusts.<br />

services for third-party trusts. Unlike (d)(4)(C) trusts,<br />

third-party pooled trusts do not have to reimburse the state<br />

for its Medicaid expenses on the beneficiary’s behalf upon<br />

their death. However, the non-profit group may still require<br />

Knowledgeable trustees. Since (d)(4)(C) pooled trusts work<br />

with many beneficiaries with disabilities their staffs are very<br />

a portion of the remaining funds go its coffers to help fund<br />

the trust’s administration or for other purposes.<br />

knowledgeable about the rules of benefit programs and<br />


It often makes sense for parents or grandparents<br />

of individuals with disabilities to take advantage of this<br />

service when they do not have family members who<br />

might serve as trustee or the amount of funds they are<br />

leaving in trust are too small to justify hiring a traditional<br />

professional trustee. In addition, if the beneficiary already<br />

pooled-trust. This is a great starting point. However,<br />

ask other families about their experiences with the pooled<br />

trusts in your community. Only beneficiaries and their<br />

families will know what it is really like to work with<br />

particular organizations and trustees.<br />

has an account with the non-profit organization’s (d)(4)(C)<br />

trust, coordination may work better if the same organization<br />

serves as trustee of the beneficiary’s third-party trust.<br />

Harry S. Margolis practices elder law, estate and<br />

special needs planning at Margolis Bloom & D’Agostino<br />

in Boston and Wellesley, Massachusetts, and is a founder<br />

Finding a Pooled Trust<br />

The Academy of Special Needs Planners provides a<br />

comprehensive directory of pooled disability trusts<br />

of the Academy of Special Needs Planners. He is author<br />

of The Baby Boomers Guide to Trusts: Your All-Purpose<br />

Estate Planning Tool and answers consumer questions<br />

nationwide on its website at specialneedsanswers.com/<br />

about estate planning issues at www.AskHarry.info.<br />

M<br />


UP OUT! &<br />

An often-expressed piece of<br />

advice given to individuals by friends and<br />

acquaintances is “You need to get out more”<br />

(usually in relation to their not seeming to know<br />

what’s going on in the world). Although being<br />

Weller Day Boat Outings:<br />

Individual, Small Group, Large<br />

Group; for children/adults with life threatening<br />

illnesses and/or disabilities, veterans and active<br />

military personnel, and at-risk youth.<br />

ignorant of the state of world affairs can assist<br />

one’s mental health in some ways; getting out<br />

and doing things in your community or elsewhere<br />

(whether work, recreation, or other activities),<br />

can be crucial for an individual’s physical and<br />

mental health.<br />

Freedom Waters Foundation has partnered with<br />

Collier County Parks and Recreation to offer<br />

Adaptive Sailing. The program meets at Sugden<br />

Regional Park in Naples, weekdays on T-TH, and on<br />

Saturdays, from Noon-3:00 PM, Oct. through April.<br />

Program participants are invited to participate is the<br />

The conundrum for individuals with divergent<br />

annual Murdo Smith Adaptive Sailing Regatta.<br />

abilities (whether due to injury, illness or a<br />

congenital condition, meaning present at birth) is<br />

how to do that. What supports and accommodations<br />

are available? To speak to that, I am pleased to<br />

introduce Freedom Waters Foundation, one of<br />

hundreds (if not thousands) adaptive sports /<br />

recreation programs across the country.<br />

Freedom Waters Foundation provides free<br />

marine-related programs for individuals with a<br />

variety of challenges, including children with<br />

cancer, veterans with PTSD, and people with<br />

physical, sensory, or mental health issues.<br />

21<br />


Veterans Program: Freedom Waters Foundation<br />

provides boating and fishing opportunities for<br />

veterans and their family members. Veterans<br />

Programs take place year-round in South Florida.<br />

Annual events in Atlanta and in Indiana include<br />

offering the opportunity for these at-risk youths to<br />

enhance their life. At the Heels and Reels Fishing<br />

Tournament female fishing mentors work with teen<br />

girls; the Buoys and Bait Fishing Tournament allows<br />

male fishing mentors to work with teen boys.<br />

individual and small boat trips as well as Veterans<br />

Meet-and-Greets aboard larger commercial vessels.<br />

Freedom Waters Foundation can be contacted at<br />

239-263-2377. Veterans who wish to participate<br />

Fishing Programs: Freedom Waters Foundation<br />

offers fishing opportunities for participants,<br />

providing fishing tackle and bait. As with the<br />

other programs, children/adults with life threatening<br />

can complete a sign-up form online. Fishing<br />

program participants can fill out a self-referral<br />

form; potential fishing mentors can complete a<br />

volunteer application.<br />

illnesses and/or disabilities, veterans and active<br />

military personnel can participate.<br />

Freedom Waters Foundations depends on one-time<br />

donations, corporate sponsorships, peer to peer<br />

Naples, Florida Fishing Tournaments for At-risk<br />

Youth: Fishing mentors are partnered with teens,<br />

fundraisers, and more. You can visit the donation<br />

page on the website for further info. M<br />





The path to a secure future<br />

for a child with special needs<br />

is mostly paved with financial<br />

and legal documents and<br />

investments, which can be<br />

Without this otherworldly ability, how do we<br />

convey all the intimate details required to allow<br />

another individual to provide the quality of care<br />

we as parents desire for our children should that<br />

unfortunate need arise?<br />

(sometimes must be) done<br />

with the aid of a special-needs<br />

lawyer or financial planner.<br />

A Letter of Intent, sometimes called a Memorandum<br />

of Intent, includes as much information about your<br />

child as you can provide. This is the best way to<br />

The Letter of Intent is<br />

different. This one is totally<br />

up to the parents. Basically,<br />

ensure that the assistance and loving guidance your<br />

child receives aligns with the standard of care you<br />

would strive for.<br />

it provides important details<br />

about your child (Cliff Notes<br />

Let’s pause to think about when this letter becomes<br />



version) to future caregiver(s)<br />

and is something many parents<br />

(including yours truly)<br />

procrastinate on. For that<br />

reason, I am pleased to<br />

introduce Kevne Sharpe, a<br />

financial planner with Mariner<br />

Wealth Advisors, to enlighten<br />

us on what to include in a<br />

Letter of Intent, whom it<br />

should be provided to, when<br />

and how to update it and more.<br />

Any “trekkies” out there?<br />

Remember Spock’s “mind<br />

meld”? As a refresher, it was<br />

a telepathic link that Vulcans,<br />

from the original “Star Trek”<br />

franchise, were able to create<br />

relevant. You have recently passed, and everyone<br />

you know is trying to process your loss. Your child<br />

may be hardest hit. Who do they turn to? Who can<br />

they trust? You want this important document in<br />

the hands of that special person who is stepping up<br />

to comfort your child and provide the support they<br />

need. Not only would you want a new guardian to<br />

have this letter but also other interested parties such<br />

as siblings, grandparents, and close friends.<br />

While not a legal document—directions in wills,<br />

trusts and other legal documents take precedence—a<br />

Letter of Intent will serve as the primary source of<br />

information about your child, providing a road map<br />

for the courts, guardians, caregivers, and others<br />

involved in your child’s life. Once it is completed,<br />

make sure to keep a copy of your Letter of Intent<br />

with your estate plan documents.<br />

with other organisms. A mind<br />

Consider your Letter of Intent a love letter to your<br />

meld allowed a Vulcan to know<br />

child. It can be the greatest gift you can provide the<br />

the innumerable details of our<br />

new caregiver as they attempt to fill your shoes.<br />

lives, including those as<br />

caregivers of our children,<br />

When starting the process of creating your Letter of<br />

with a simple scalp massage.<br />

Intent, you begin to realize all you do for your child.<br />

Alas, Vulcans don’t exist, and<br />

Don’t let the magnitude of this task cause you to<br />

so the mind meld simply<br />

procrastinate. As Nike’s ads advise, “Just Do It.”<br />

remains an interesting way<br />

to forward a sci-fi plot.<br />


The Basics: Provide vital information such as your<br />

child’s birthdate, Social Security number and<br />

Medicaid and/or Medicare number. Indicate where<br />

your child’s birth certificate, Social Security card,<br />

individualized education program (IEP) files,<br />

psychological evaluations and medical records are<br />

located. Explain what public benefits your child<br />

The Future: What are your dreams and hopes<br />

for your child? What is your vision for education?<br />

Do you see them living independently? What steps<br />

have already been taken? If not yet employed, do you<br />

envision they will be? If your child is on a services’<br />

wait list, share those details. What resource<br />

opportunities may be available in the future?<br />

qualifies for, both through Social Security as well<br />

as from the state for Medicaid, their value and,<br />

importantly, how to navigate the murky waters of<br />

special-needs planning to maintain qualification.<br />

Share the important elements of your child’s health,<br />

diagnosis, and medical, physical, and behavioral<br />

therapy providers. Include where their immunization<br />

history is, what medications are necessary, how to<br />

obtain them and when to administer them. What<br />

about the agencies you are aligned with that are<br />

coordinating various support and services? Who<br />

will be the new Social Security representative<br />

payee? List contact information for everyone<br />

There are no rules for this important task. Let it<br />

take whatever form you like. (There are templates<br />

available via a simple internet search for those who<br />

prefer some structure in this effort.) Have this<br />

information memorialized in writing or video and<br />

update it periodically. Don’t keep it a secret—but<br />

do let the people who care for you and your child<br />

know it exists and where to find it. Spending some<br />

time creating your Letter of Intent for your special<br />

child will allow your voice to be clearly heard by<br />

that generous person assuming your vital role.<br />

All involved will be forever grateful.<br />

involved in your child’s life and their role.<br />

Kevne Sharpe, CFP®, ChSNC®, AEP®<br />

The Day-to-Day: What school program and<br />

teachers are involved? (Who is your child’s<br />

favorite?) Do they ride the school bus? If they<br />

are working, provide their employer’s contact<br />

information. If you are reporting wages to Social<br />

Security, share how that is accomplished. Do they<br />

Wealth Advisor<br />

Mariner Wealth Advisors<br />

8871 Ridgeline Blvd., Ste. 100<br />

Highlands Ranch, CO 80129<br />

(303) 529-0024<br />

Kevne.Sharpe@MarinerWealthAdvisors.com M<br />

have a public transit pass and how is it renewed?<br />

Do they find joy in having chocolate milk for<br />

breakfast or viewing the most recent sci-fi movie?<br />

What triggers a negative response and what has<br />

been your calming remedy? What are your child’s<br />

favorite foods, toys, sports teams, and songs?<br />

Share who their friends are and how to reach them.<br />

Do you want your child to have their faith remain<br />

a part of their life? What does that look like?<br />



Heather Ehle, a registered nurse, founded Project Sanctuary<br />

in 2007 to help military families upon discovering<br />

programs and services available to them focused on the<br />

individual service member, rather than entire families.<br />

Service Members, spouses and children are all affected<br />

by the stresses of military life, especially if they have<br />

additional medical, physical, sensory, or other challenges.<br />

The core of the program are the therapeutic retreats.<br />

“Project Sanctuary hosts therapeutic retreats in five states<br />

across the country that are staffed and designed by the<br />

Certified Therapeutic Recreation Specialists (CTRS) and<br />

the licensed counselors and social workers on Project<br />

Sanctuary’s staff. Retreats are open to active-duty service<br />

members and veterans of all branches of the military and<br />

all eras. All types of families, including the LGBTQ+<br />

community, are welcome at our retreats.”<br />

<strong>2023</strong> - Available Family Retreats<br />

“Believing that military families serve together,<br />

and they should heal together, Project Sanctuary has<br />

Location<br />

Dates<br />

become the authority in providing therapeutic retreats<br />

and delivering critical support our families need and<br />

Stanwood WA: Warm Beach July 21-25<br />

deserve. The result? Generational transformations.”<br />

Jeanne Hastings, CTRS, a <strong>Milestones</strong> <strong>Magazine</strong><br />

contributor and creator of My Recreation Therapist,<br />

is one of the recreation specialists who have been<br />

involved with this organization.<br />

M<br />

Granby CO:<br />

YMCA Snow Mountain Ranch<br />

Marble Falls TX:<br />

The Retreat at Balcones Springs<br />

St. Simons GA:<br />

Epworth by the Sea<br />

Feb. 3-8, Apr. 14-19, May 12-17, June 2-7 & 9-14,<br />

Aug. 18-23 & 15-30, Sept. 22-27, Oct. 13-18, Nov. 3-8<br />

Mar. 10-15, Nov. 3-8<br />

Apr. 28 - May 3, July 7-12, Oct. 20-25<br />

NE Maryland: Sandy Cove Nov. 17-22<br />




Helping Individuals with Disabilities & their Families<br />

Achieve & Celebrate Events & <strong>Milestones</strong><br />

in their Lives<br />

<strong>Milestones</strong> <strong>Magazine</strong> – Participate with Us!<br />

<strong>Milestones</strong> <strong>Magazine</strong> appreciates the support and participation of our partners in several ways,<br />

including as magazine contributors. We support our magazine contributors with discounts on<br />

advertising and the opportunity to reach our community by hosting online events and engaging in<br />

recorded one-on-one Zoom conversations with <strong>Milestones</strong> <strong>Magazine</strong> publisher Susie Redfern.<br />

Here are some of our articles from past issues in which the contributor voluntarily placed an ad.<br />

(We have no requirement to advertise as a condition of becoming an article contributor).<br />

Forest Preserve District of Will County: Nature Calls (Page 13)<br />

Wilson’s Garden of Hope, LLC: Play with Me (Page 11)<br />

Color-Coded Chef: Let’s Get Cooking (Page 6-8)<br />

Color-Coded Chef: Supported Employment, Family Style<br />

(Page 3-5)<br />

Nancy Roach Wilder, It’s My Money (Page 24-25)<br />

Aspiritech, Matt Hemauer, I’m on the Autism Spectrum,<br />

Let Me TEACH YOU How to Work from Home (Page 6-7)<br />

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