Boling Center for Developmental Disabilities CAC
March 30, 2016 Agenda
Note from Ace: FONT
11:30am: Welcome and Introductions
 Melvin Jackson, CLEE, CAC Vice Chair
 Janice Craven, self-advocate, MCIL (on behalf of Sandi Klink)
 Marian Bacon, new CAC member
 Kate McDonald, parent, DRT
 Gina Brady, parent, DRT
 Robin Goddard, parent, new CAC member
 Ginger Walton, parent, CAC Chair
 Ace Madjlesi, advocate, CAC Secretary
 Malissa Duckworth, BCDD (on behalf of Belinda Hardy), parent
 Cindy Gardner, Special Guest, Special Needs Law Center
 Jenness Roth, parent, BCDD
 Fred Palmer, BCDD
 Judy Brooks, BCDD, UCED Little Rock
 Patrick Helper-Ferris, self-advocate, new CAC member
 Alicia Cone, DD Council
 Sandra Hawkins, Mid-South ARC
11:35am: Approval of Oct. 30, 2015 Minutes
 Minutes passed and are attached to today’s email.
 For copies of past meeting minutes, email acemadjlesi@gmail.com.
11:40am: New Business
 Welcome New Members!
o Marian Bacon, former MCIL employee, self-advocate with
multiple disabilities, sits on several boards.
o Patrick Helper-Ferris, has used a wheelchair since an accident
in 2010. Also a member and volunteer with Mid-South Peace &
Justice Center.
o Robin Goddard, parent of 9 children, many of whom are adopted
and have multiple disabilities.
 New Member Overview of Boling Center and CAC, Dr. Palmer
o Boling Center is a University Center for Excellence in
Developmental Disabilities (UCEDD). There is at least one
UCEDD in each state. UCEDDs were formed by The DD Act,
along with DD planning councils and other administrative bodies
for each state. The developmental disability network in TN is
comprised of 4 entities: Boling, Vanderbilt Kennedy Center,
Disability Rights TN, and the DD Council and is very wellnetworked. This network has worked closely on a variety of
issues, including transition, employment, and disaster
preparedness. The function of the Boling CAC is to give advice,
review strategic plans, review reports, and progress towards
goals, and to generally ensure community representation and
prevent the Boling Center from becoming “an ivory tower.”
o For more information, please visit https://www.uthsc.edu/bcdd/
o Ace and Elizabeth will schedule an introductory lunch for new
CAC members and officers. Details TBD.
o Upcoming Officer Elections
 Nomination Committee: Ace, Dr. Palmer, and Ginger
 Please send any nominations (you can even nominate
yourself!) to Ace at acemadjlesi@gmail.com
 Ginger: “Support from Boling is phenomenal,” so don’t
be intimidated about officer responsibilities.
 Copy of by-laws and officer responsibilities is on the
website.
http://www.uthsc.edu/bcdd/about/Community_Advisory_Council.php
 Feedback for Boling Social Media
o Check out Boling social media and contact Elizabeth
(ebishop@uthsc.edu) if you have any feedback.
o Facebook page
https://www.facebook.com/BolingCenterForDevelopmentalDisabili
ties/
o Twitter: @boling_UT
o You can also give feedback about the website directly from the
site. Navigate to https://www.uthsc.edu/bcdd/ and then click on
“Rate Our Website” under Quicklinks.
 Cindy Gardner, Special Needs Law Center: ABLE Act in TN
o Partner at Special Needs Law Center, which specializes in
conservatorships and special needs trusts (i.e., financial planning
for people with disabilities).
o In 2006, down-syndrome association of parents began lobbying to
expand the “$2000 limit” (i.e., an individual with a disability cannot
qualify for SSI and TNcare if they have over $2000 in
assets/resources).
o From 2006 – 2014, the ABLE Act was debated in Congress.
o Starting in 2016, TN is one of the first states to enact legislation
implementing the ABLE Act.
o TN already offers “529” accounts, which are education-specific
accounts managed by the TN State Dept. of Treasury.
 ABLE accounts are 529a accounts and are comparable to
529 accounts in that they are also managed by the TN State
Dept. of Treasury.
o An ABLE (529a) account can be used for any “QDE” (Qualified
Disability Expense) and not just education.
o The current 529a maximum per year is $14000, which is also the
gift tax exclusion limit. That amount is set by the IRS and is
subject to change based on IRS regulations.
o 529a accounts grow tax-free up to $100,000.
o Once a 529a account reaches the $100,000 limit, the individual’s
SSI is suspended until they drop below $100,000. However, the
individual’s TNcare coverage is not affected.
o 529a funds can be contributed by family, friends, community
members, or individuals themselves.
o Like a retirement account, 529a accounts will be invested in a
range of mutual funds, as facilitated by the TN State Dept. of
o
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o
o
o
o
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Treasury. People with a 529a account will be able to invest in the
same range of mutual funds as 529 accounts, which is considered
an excellent program. Account-holders will be able to choose lowrisk, low-interest (or high-interest, high-risk) funds.
You can have funds automatically drafted from paychecks into a
529a account.
ABLEtn.gov
Anticipates ABLE going live in TN summer 2016.
Eligibility requirements MIGHT be expanded from onset of
disability before age 26 to onset of disability before age 46.
Like all personal funds, 529a accounts are subject to the
“Medicaid payback provision.” I.e., when a person passes away,
if they have received needs-based programs during their life, the
state can claim against their estate after their death.
 (The State will not make a claim if you die before age 55.)
An individual does not need a lawyer to set up an ABLE trust (as
opposed to a first-party special needs trust). You can go to the
website and set it up yourself. (But you still might be interested in
first party special needs trust, or a “whoops trust”.)
Have heard things like “I don’t want my kid to go to work because
I don’t want them to lose their benefits.” The ABLE act is the
solution for this.
Is the ABLE account transferrable (for example, to an heir)?
 You can roll over a 529 to a 529a, roll a 529a to 529, or
multiple 529 into a 529.
Does a person have to be SSI-eligible to be eligible for 529a?
 Have to have a disability certificate, but not sure
 If age is raised from 26 to 46, the plan may expand to SSDIeligible individuals.
Dr. Palmer: The Boling sees many kids at their “first diagnosis,”
so Boling may want to have a system in place to ensure that
families are made aware of the ABLE act when they receive a
diagnosis.
 Would like advice from CAC as to how to disseminate
information on the ABLE act.
 Possibly invite TN State Dept. of Treasury to educate BCDD
staff and CAC members / train “Navigators” to help families
navigate ABLE act legislation and establish 529a accounts.
o The account will live within the TN State Dept. of Treasury, who
charge an administration fee of 35 cents per $1000.
o You don’t have to use TN’s just because you live here. You can
use another state’s plans so there will be competition among the
states about who has the best one. It can also travel with you if
you move.
o How accessible are the funds? Can you touch them?
 The intention is for the account to grow, but unclear how
accounts will be restricted. For example, there may be limits
on the number of withdrawals made within a year.
12:30pm: Agency Reports / Announcements
 Disability Rights TN (Gina Brady)
o West TN is still transitioning with staff.
o State-wide meeting has led to collaboration with Red Cross on
disaster preparedness. For example, a partner in East TN went
with Red Cross to assess accessibility in regards to a recent apt
building that caught fire.
o West TN seems to have less participation, compared to East TN
and Middle TN. They are hoping to expand West TN participation,
specifically with regards to upcoming Red Cross trainings.
 MCIL (Janice Craven)
o MCIL director Sandi Klink is traveling to a joint meeting of the DD
network and Independent Living network.
 STEP
o no update – Fatima Ellis Clark is the new West TN director.
 CLEE (Melvin Jackson, for Aaron Kohring)
o Continuing to work on self-advocacy and transition with Tipton
County students.
 41 students at Brighton High School and 11 interns with
Project Search
o CLEE is working with new school systems as well: Arlington
Community Schools, Haywood County Schools, and Stewart
County Schools
o Transition planning and assessment training with TN Dept. of
Education
 In March, they had 15 educators in Savannah, TN (Hardin
County).
 They will be in Humphreys County in April and Carrol Count
in January.
o Transition planning overview:
 student participation in IEP meetings
 age-appropriate transition assessments
 measurable post-secondary goals, course of study, and
measurable annual goals
 transition service
 agency participation
 MidSouth ARC
o no updates
 Boling Center for Developmental Disabilities, Dr. Fred Palmer
o Excited about March 31 meeting in Nashville between the DD
Council and Independent Living network. Dr. Bruce Keisling will
represent the Boling Center.
o Boling recently submitted a competitive grant proposal to renew
their LEND program (graduate, interdisciplinary training program),
which is funded by the maternal and child health bureau.
 Boling is proposing to have over 30 trainees (for at least 300
hours) over multiple disciplines, including a new discipline in
occupational therapy.
 Boling is in discussion with the University of Memphis law
school about having a LEND trainee as well (essentially
developing a track over there for disability law).
 Boling also hopes to have a self-advocate trainee in the
LEND program within the next year or so.
 LEND has been supported since 1970, and Boling should
hear back about this grant application by the end of June.
 In Dr. Palmer’s view, this is one of the best applications
Boling has written in many years.
 Thanks to all who have had major roles in this application,
including Elizabeth Bishop, Toni Whitaker, Jenness Roth,
and Bruce Keisling.
 Vanderbilt Kennedy Center, Laurie Fleming
o Teaming up with a number of organizations to celebrate Autism
Awareness Month including Tennessee Brew Works, Tennessee
Performing Arts Center, the Nashville Zoo at Grassmere, and the
Frist Center for the Visual Arts.
http://vkc.mc.vanderbilt.edu/news/1454
o Erik Carter, professor of special education, served as an expert
speaker at a Congressional briefing on March 4 sponsored by the
Friends of the Institutes of Educational Sciences.
o The VKC is partnering with TASH for a regional conference on
“Faith and Flourishing: Embracing Inclusion for People with
Disabilities, Their Families, and Congregations.”
http://vkc.mc.vanderbilt.edu/events/5673
o The TN Postsecondary Alliance for Opportunities for Students
with IDD will have its next quarterly meeting on Thursday, May 26
from 5 – 6 PM at the Nashville Airport Marriott in conjunction with
the Tennessee Disability MegaConference. This meeting is open
to the public. http://www.tndisabilitymegaconference.org/
o The TennesseeWorks Partnership will have its next quarterly
meeting on Thursday, May 27 from 1 – 4 PM at the Nashville
Airport Marriott in conjunction with the Tennessee Disability
MegaConference. This meeting is open to the public.
http://www.tndisabilitymegaconference.org/
 DD Council (Alicia Cone)
1. Updating the Person Centered Initiative for Managed Care
Organizations (MCOs) that Council staff mentioned at the last CAC
meeting, the Council Executive Director met with TennCare Long Term
Services and Support staff to discuss and develop a response to a
proposal Michael Smull from Support Development Associates had
submitted. The proposal was in response to a concept paper
developed around person centered managed care organizations.
TennCare is interested in funding introductory training for MCOs in
person centered practices, and in having the consultants work with
them on training related to specific requirements in the contract with
MCOs. The Council will pursue the intensive 10-month training on
becoming a person centered organization, with person centered
practices linked to agency policy and process development. SDA was
then asked to submit a formal application, and that application is
currently going through the Council review and evaluation process.
The projected start date is October 1.
2. Council staff continues to work on many priorities related to the
Supporting Families Community of Practice, including producing a
monthly e-newsletter. In November, we held a training for community
organizations that provide supports to families of people with
disabilities about the initiative and tools used for assisting families in
planning for the future and for needed supports. The Council is working
with Vanderbilt Kennedy Center on producing a "Kindred Stories"
collection of interviews with families, conducted by Vanderbilt students,
sharing stories of how families access formal services and more
informal supports within their community, to be released soon. Staff
presented at the "Partners in Education" conference about educators
using Supporting Families tools with students and families, and will
also be presenting at the MegaConference. We are partnering with the
Arc TN on implementing a similar initiative, a strategic plan for aligning
many different efforts across the state to provide support to families of
people with disabilities and seniors.
3. In September, The Council organized a joint meeting between the
Tennessee DD Network and the IL Network (Centers for Independent
Living (CILs) and SILC). The group identified areas of, and possible
projects for, future collaboration. Afterwards, we surveyed the two
Networks regarding possible joint projects. The first project we are
undertaking is a joint publication. To move forward with the joint
special report, the Communications Director developed a survey to
collect information from both Networks, so that we can share
information about the two networks and this collaboration. Our second
meeting of the two networks will occur Thursday, March 31st. We will
delve more deeply into possible future collaborative work.
4. The Council's Partners in Policymaking(tm) Leadership Institute is an
advocacy, self-advocacy and leadership training for adults with
disabilities and family members of persons with disabilities. This core
program of the Council has been training people from across the state
since 1993, and boasts nearly 500 graduates. The 2015-16 Class
began in late October. There are currently 25 participants in the
program. The Annual Partners Reunion Conference was held March
18 & 19 at the Nashville Airport Embassy Suites Hotel. Applications
are being accepted for the 2016-17 Partners Class. For more
information, contact Ned Andrew or visit the Partners page on the
Council website.
5. October 5-9, the Council hosted a second Self-Advocacy Leadership
Academy. This year's focus was on the new HCBS (Home and
Community-Based Services) settings rules. The Council collaborated
with staff from the Commonwealth Council on Developmental
Disabilities in Kentucky and ASAN (Autistic Self-Advocacy Network).
Participants were from TN and KY. The 12 attendees (plus staff) heard
presentations on self-advocacy, grass-roots organizing, HCBS
changes to existing rules, and the history of the disability experience.
While there are no future plans for a third Academy, staff is currently
working on future plans for youth leadership training.
6. Council staff developed and presented a concept paper to the
Tennessee Department of Human Resources' Strategic Learning
Solutions staff regarding establishing a training program for those state
employees whose work has a direct impact on individuals with
disabilities and their families in TN. The proposed program would
target those in state government whose work affects people with
disabilities, which would include workers from at least 16 state
agencies and over 55 programs. DoHR brought together other state
departments in order to go through a facilitated process to select the
competencies for the new leadership academy. The Orientation
session and first Summit dates have been set. The application will be
going out to state agencies and the curriculum is under development.
7. The Council was invited to partner with the TN Department of Labor
and Workforce Development in the fall to sponsor their March edition
of a new monthly program they produce through News Channel 5
about employment and employers called "Inside Workforce
Development". The March program was focused on employment for
people with disabilities, in honor of Developmental Disabilities
Awareness Month. The three guests who were interviewed during the
program are Council Vice-Chair Tommy Lee Kidd, Dept. of Education's
Joey Hassell, and an employer at a Project SEARCH site at Vanderbilt
Children's Hospital who hired people with disabilities after they
completed the Project SEARCH program. The show was taped on
March 1 and has aired multiple times on News Channel 5, as well as
being available online. You can view our edition of the program
at: http://www.newschannel5.com/plus/inside-workforcedevelopment/inside-workforce-development-tennessee-council-ondevelopmental-disabilities (It's in 3 separate segments that should play
automatically upon completion of the previous segment.)
8. The Council has now completed 60 days of review for its proposed
new 5 year state plan. Staff wishes to thank everyone who provided
either public input or review into the plan. The next step is to edit the
goals and objectives section of the plan, develop work plans for FY17,
and FY18, finalize all other sections of the state plan, receive final
approval from the Council to submit the plan in May, and submit it to
our Federal oversight agency by August 15, 2016.
Potential topics for future meetings:
 If you have ideas, send them to acemadjlesi@gmail.com
 MCO arrangements for long-term services and supports (including
housing, employment, etc.) across the state (which start in July).
 Post-secondary education
Next Meeting: June 10, 2016 at MCIL (1633 Madison Ave)
Final 2016 Meeting: Oct. 21, 2016 at the Boling Center
Attached: Cindy Gardner handout
Feature Article: ABLE v. Special Needs Trust
Email Intro: The ABLE Program is expected to be operational this year in Tennessee
(see www.abletn.gov). In this article we discuss the differences between an ABLE
account and a Special Needs Trust and the benefits they offer families with disabilities
when planning for the future of a loved one with a disability.
What’s the Difference Between a Special Needs Trust and an ABLE Account?
By Cindy Gardner, Attorney
It isn’t often that we get to report that Tennessee was first at something that benefits
people with disabilities, but the ABLE Act is one such example! Tennessee was
among the earliest states to adopt legislation to create ABLE Accounts. The program is
expected to be operational later this year. In the mean time, let’s cover the differences
and benefits of an ABLE account compared to a Special Needs Trust, another tool that
allows families to plan for the financial future of a child with a disability.
Before we begin to set out the differences between Special Needs Trust and ABLE
Accounts, let us begin with a general rule. To qualify for Social Security Income (SSI)
and Medicaid, a person with disability cannot have resources in excess of $2,000 and
must have a “limited income.” Both ABLE Accounts and Special Needs Trusts are
vehicles that allow for “exceptions” to that rule for people with disabilities.
WHAT IS AN ABLE ACCOUNT?
The Achieving a Better Life Experience (ABLE) Legislation was first introduced in
Congress in 2006. A group of parents convened and decided to do something about
the inequity in our system that didn’t allow their children to save money because of the
$2,000 resource limitation. For years, people with disabilities, their parents and
advocates asked Congress to provide a way that would allow them to save money,
while still being able to qualify for much needed Social Security and Medicaid benefits.
In December 2014 advocacy efforts paid off and the ABLE Act would take effect
January 1, 20151. The legislation provides a tax-deferred savings vehicle for people
with disabilities. People with disabilities would be able to save their earnings and other
funds for their own future. The law also allows others, such as parents, to help them
save.
Although no state has implemented the ABLE Act yet, it is expected some states will begin implementation as early as mid to
late 2016, with most states implementing in 2017
1
A person who becomes disabled before the age of 26 may have an ABLE account, but
only one. Contributions to the ABLE account can be made by anyone interested in
helping save for that individual’s future, but total deposits cannot exceed $14,000.002
per year. The account can grow tax-free until it reaches $100,000.00 and it will not
jeopardize the person’s eligibility for SSI or Medicaid benefits. Once the account
grows to $100,000.00, the person’s SSI check can be suspended, but they will still be
eligible for Medicaid.
Essentially, ABLE accounts are similar to a 529 account that allows parents to save
for expected future expenses of post-secondary education for their children. ABLE
accounts will be “529A” or “529-ABLE” plans set up through each state’s qualified
program. In Tennessee, that is the Department of Treasury, but you can use a plan
from any state, thanks to recent legislation. Families do not need a lawyer to establish
an ABLE account, although it might help to speak to a financial planner familiar with
ABLE accounts prior to opening one.
ABLE ACCOUNT FAQS
What is a Qualified Disability Expense (QDE)?
There are strict limits as to what the ABLE account may be used for. Allowable
distributions are for any expenses related to the eligible individual’s disability, namely:
Education; Housing; Transportation; Employment Training and Support; Assistive
Technology and Personal Support Services; Health Prevention and Wellness;
Financial Management and Administrative Services; Legal fees; Expenses for
Oversight and Monitoring; Funeral and Burial Expenses; and other expenses that may
be identified in the Internal Revenue Bulletin3.
Can my child deposit their paycheck in an ABLE Account?
Yes, your child will be able to save some or all of their earnings in the ABLE account
each month, but this will still be considered “countable income” for Social Security. This
means that their SSI check will still be reduced just as it was before the ABLE Act.
What should families keep in mind, or what’s the catch?
MEDICAID PAYBACK! When the person for whom the ABLE Account was set up
passes away, the balance in the account must be paid back to Medicaid (Tenncare) as
reimbursement for any services they provided during the individual’s lifetime.
ALSO, WATCH OUT! – if distributions exceed an individual’s QDEs for the year, one
half of the distribution will be considered gross income to the individual, plus a 10%
penalty could be assessed on the distribution.
NOW FOR SPECIAL NEEDS TRUST
Contrary to an ABLE account, a 3rd Party Special Needs Trust allows everyone
EXCEPT the person with a disability to save money, leave an inheritance, own
property and plan and save for future expenses. (But see “Special Needs Fairness
Act” footnote 4). Another difference is that there are different types of Special Needs
Trusts. A “First Party” Special Needs Trust is the closest to an ABLE account in that
This amount may go up each year, similar to the gift tax exclusion, depending on IRS regulations.
For instance, comments to the IRS regulations suggested a smart phone might even be a qualified disability expense, if
necessary for the safe and effective communication and navigation of a child with autism
2
3
the money or asset can be in the beneficiary’s name and yet they can still qualify for
governmental benefits by “saving” the money into the trust.
Another important distinction is how each account allows funds to be spent. Once
money goes into an ABLE account, it can only be used to pay for a QDE. On the other
hand, funds in a Special Needs Trust can generally be used for anything that
“supplements” a person’s benefits. A Trust can also own property, houses, cars,
retirement accounts, etc and can even pay for your child to go on vacations or other
“fun” things. If the beneficiary dies, it can be left to other children, nieces, nephews, or
even to a favorite charity. Special Needs Trusts also allow parents to leave some or all
of their estate, such as a home, to their child. Speaking with a lawyer or financial
advisor can help parents determine how and when to make these decisions.
THE BENEFITS OF HAVING BOTH
It may be advisable to have both an ABLE account and a Special Needs Trust. An
ABLE account allows families and individuals with disabilities to do something that
many put off for fear of losing benefits: saving money dedicated for the future!
Contributions to an ABLE Account can be made automatically through a payroll
deduction. Parents can also ask friends and family members to give birthday or holiday
gifts to their child through the ABLE account.
As an example, beginning at a child’s birth, if a parent saved $100 a month into an
ABLE account earning 6% interest, the account would have $55,555.36 by the time the
child reaches their 22nd birthday! That would be a wonderful start to a nest egg for
their future!
Having an ABLE Account to force you to save now for your child’s future, as well as a
Special Needs Trust in your Will, to leave them a portion of your estate, would go a
long way towards a great plan for your family’s future!
Key Differences
ABLE Account
Special Needs Trust
Contributions must be in cash
Contribution can be cash or non(or rollover from another qualifying cash assets (house, car, land,
family member’s ABLE account)
stocks, etc.)
$14,000 annual maximum
No maximum
contribution
$100,000 CAP
No Cap
Medicaid Payback once person
1st Party SNT – same
dies
3rd Party SNT - No Medicaid
Tenncare can take any or all of the Payback, you can direct it to go to
account to reimburse them for
your other heirs (siblings, charity,
expenses paid for that individual
etc.)
throughout lifetime.
Limitations on distributions:
No limitations as long as “solely for
“Qualified Disability Expenses”
the benefit of the beneficiary” and
Education, housing, transportation, not for anything Tenncare pays for.
employment training & support,
assistive technology and personal
support services, health, prevention
and wellness, financial
management and administrative
services, legal fees, expenses for
oversight, monitoring, funeral and
burial expenses.
10% penalty for violating
distribution rules, plus considered
taxable income to the individual
Can be established by the person
with a disability (if able), or their
agent under a POA, their parent or
conservator
No such penalty
1st party SNT – must be established
by a parent, grandparent,
conservator or the court4;
3rd party SNT – can be established
by anyone, but still not the person
with a disability
What’s Next? Seminar: Planning for Your Child’s Future After High School
Join Special Needs Law Center and Continuum Planning Partners for an information
packed seminar to help you plan for your child's future after high school. Expert
speakers will cover arrange of topics including: Conservatorships; Special Needs
Trust; Estate Planning; Financial Planning; Benefits (including Social Security and
TennCare); Employment; Housing; Post-Secondary Opportunities; Transportation.
The event is free and lunch will provided for all attendees. Though information can be
used by anyone, families with children in high school will benefit the most.
Tax Day is April 15
People with disabilities who work, event if they receive SSI/SSDI Benefits, could use
the Earned Income Tax Credit to receive a tax refund when filing a federal income tax
return. LEARN MORE [Link: http://specialneedsanswers.com/the-earned-income-taxcredit-could-provide-a-tax-refund-for-people-with-disabilities-15514]
Money Matters
In each newsletter, Audrey Russell, a financial planner, will share financial advice
relevant to families with a family member with a disability. In her first column Audrey
shares….[Link to full article on website]
We’ve Moved
The Special Needs Law Center has a new address. We are happy to have the Arc
Davidson County as our neighbors in our new location still conveniently located in
MetroCenter. Make note of the change in your address book.
[Image with new address: 50 Vantage Way, Suite 202 Nashville, TN 37228]
Special Needs Trust Fairness Act, currently before Congress, would allow individuals to establish their own Special Needs
Trust
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Ellie’s Corner
We’re not quite sure why everyone doesn’t own a beagle; they are the sweetest pups
in the world. Ellie, Cindy’s beagle, is one such example. In this newsletter, Ellie shares
her favorite cookie recipe: Snickerdoodles. Don’t even bother trying to hold to eating
just one.
[Picture of Ellie with Recipe]
Other Dates:
Cindy—where else will you be presenting in April/May/June?
April 6: TCSW Conference