Building Our Future -- Family Hearing Day, January 22, 2014
Building Our Future
Family Hearing Day at the State Capitol –
Wednesday, January 22nd, 2014
First, a Little Background
Connecticut is one of several states that maintain a dual publicprivate system of housing and support for people with intellectual and
developmental disabilities. The State runs the Southbury Training
School (an institution), five regional centers (“mini institutions”
housing up to 40 people) and several group homes (housing 3-6
individuals each). 187 private providers, like Easter Seals and
chapters of the Arc, provide additional group homes.
With few exceptions, for the last 40 years,
placement in one of these settings has been the
only option available for adults with a disability who
cannot continue living with parents or another
Over the years, demand for housing in this system
has outpaced capacity. Admission to Southbury was
closed in 1986. As of June 2013, there were 1,761
people on the DDS waiting list for housing placement,
many having been there for years. The only people
being placed in group homes today are those who
are deemed “emergencies” because their
caregivers (usually elderly parents) have died.
Forty years of experience has shown that group home
placement or the “one-size-fits-all” approach, while
better than institutionalization, does not provide the
quality of life for which many had hoped.
With advances in education and medical care, most
people with intellectual and developmental disabilities
are able to pursue individual interests and remain
engaged with the community in ways that are difficult to
support in a group home setting. Placing everyone in
a group home is also unsustainably expensive.
On January 22nd, we are asking our families – even those
with little ones -- to attend the Family Hearing Day in
Hartford. After years of stagnation and loss in the State’s
support system for people with disabilities, a window of
opportunity has opened and legislators are listening.
Fixing the system will take many years; we need everyone
to be a part of the process! To make clear what is at stake,
we share the following story.
Note: Each individual with a disability is different and has different support
needs. Some might need no more support than a “typical” person, and others
might require round-the-clock staff, seven days a week. This example probably
falls somewhere in the middle.
Do You Know What the Future Will Cost?
Let’s look at one scenario, using Sean, a real teen who
lives with Down syndrome. Sean is 16 and an only
child. He has no family in Connecticut, besides his
parents, and little family elsewhere in the country. His
support system consists of friends and neighbors, and
care his parents pay for.
Make no mistake, this picture, while based in real
numbers, is painted with assumptions: we assume
Sean will be among the 20% of adults with intellectual
disabilities who hold a job; we assume he will be able
to function with a fairly limited level of support; we
assume that financial catastrophe will not strike in the
next six years and that his parents will be able to
provide the level of financial assistance to him that they
So, fast forward for a moment, and pretend that
it is Sean’s 22nd birthday, and he has just aged
out of the school system.
He works 20 hours per week at a job in town, at
$8.70/hour. He also gets Social Security
benefits (SSI), because he is disabled.
His parents (in their sixties when Sean is 22), decide to downsize from
their current home, in which they have significant equity. With the profit
from that sale, coupled with money they have saved over the years for
this purpose, they are able to purchase a $300,000 two-bedroom
condominium in town for Sean with cash – so no mortgage payment; just
taxes, upkeep, insurance and the homeowners fees.
They want Sean to be well-settled into adulthood as early as possible, so
that when they die, Sean will only lose his parents, not his way of life.
SSI (Max fed base rate for 2014)
CT SSI Supplement
Gross wages 20 hr/wk @ $8.70/hour
When you work and get SSI, money is deducted from your benefit, based on
a fairly simple formula: the first $20 of income (from any source) does not
count, and the first $65 of earned wages does not count. After that 50% of
your wage is deducted from your benefit.
To calculate how much Sean’s SSI will be
reduced each month, we add his CT SSI
Supplement to his gross wages for a total of
$864. Then we subtract $20 ($844) and $65
for a “countable” income of $779. We then
divide $779 by two, to determine the amount
that will be deducted from the SSI base:
$389 (rounded). Sean’s monthly SSI benefit
is, therefore, $389.
If Sean were to increase his earnings and/or hours to the point where his
countable income equaled the maximum federal base rate of $720 ($1357
gross per month), he would lose his SSI benefit and the CT State
Total Monthly Income After Taxes
Sean’s after-taxes monthly wage
** Annually, this is $12,372 or $882 over the
federal poverty line**
But Doesn’t Sean Get Help From the State?
The Department of Developmental Services provides
benefits to people with developmental disabilities, based
on level of need. An individual level of need is
determined by the results of a detailed questionnaire
about the client’s skills.
In general, a person with Down syndrome with fairly
significant support needs might qualify for a level of
need that translates to $10,000-$12,000 per year.
THIS AMOUNT IS NOT GUARANTEED; IF THE
LEGISLATURE CUTS THE DDS BUDGET IN ANY
GIVEN YEAR, THE AMOUNT OF MONEY
AVAILABLE FOR SUPPORT MAY BE REDUCED.
To reduce Sean’s housing costs, his parents locate a
suitable roommate for him, and the two divide the
housing costs at $551 each.
This leaves Sean with $480 per month to pay for food,
clothing, incidentals, and entertainment.
In addition to his living expenses, Sean will need to
pay for support, both in his living arrangements, and at
Here is a rough breakdown of services he might need:
For work -• Job coaching services
• Transportation to work, as there is only very, very limited public
transportation available in his town
For living in his own home –
• Staff to assist him in day-to-day planning – groceries, paying bills,
planning meals, monitoring medication, etc.
• Someone will need to be available to occasionally “negotiate the
system” for him when new staff needs to be hired, or problems with
transportation need to be ironed out.
For quality of life –
• Sean likes to go out once a week to a community event, or,
during the summer, to the beach. While sometimes there
will be an “able” friend to go with him, it is very likely he will
need a paid companion to accompany him most of the
• He also participates in Special Olympics once a week,
does therapeutic horseback riding and takes gymnastics
lessons. He will need someone to transport him to those
Cost of Services
15 hours per week paid adult companion @ $10/hr
Transportation to work @.86/mile
Individualized Supported Employment @$16/hr
Individualized Home Supports @$20/hr
Individual Support Broker @ 40.42/hr, 12 hours/yr
Individual Goods & Services Supervisor @$15/hr
Total 52 weeks/yr
Sean’s funding for services from DDS is only
$10,000, resulting in an annual shortfall of
How Can Sean Fix This Shortfall?
Sean’s parents cannot afford $19,588 per year in added
expenses. In fact, if they provide him more than $661 in
financial assistance per month, he will lose his SSI
benefit. Once an SSI benefit has been lost, it can be
difficult or impossible to have it reinstated.
The CT Department of Developmental Services has
been holding transition workshops around the state
for the last year, to help parents understand the
economic pressures they will be facing, and to assist
them in thinking of creative ways to deal with them.
Some of the suggestions presented at the workshops have
• Match Sean with a roommate who has skills that can
compensate for Sean’s deficits, and with whom he can share
• Develop a “circle of friends and family” to volunteer to provide
services. For example, instead of paying for transportation, he
might identify a co-worker who works the same hours and lives
near Sean to transport him to and from work; or, maybe a
friend of one of those included in Sean’s “circle of friends”
enjoys going to the beach; he or she could go with Sean,
instead of employing a paid companion to go with him.
• His parents could act as his support broker and goods
supervisor. When they die, someone from Sean’s “circle of
friends” would take over.
• Help Sean access resources available through low-income
programs, such as food stamps, food pantries, etc.
The Worst-Case Scenario
In the event that identifying volunteers to provide support is not
sufficient, or is not dependable, Sean’s parents would have little
choice but to keep him living at home with them, perhaps, using the
money intended for buying him a home to pay for supports out-ofpocket. While this might result in a loss of his SSI benefit and a
reduced sense of independence and self-direction over-all for Sean,
On a day-to-day basis, it might improve his quality of life while his
parents are alive.
In this plan, when Sean’s parents die, he would be placed in a
group home, if a bed were available, or adult foster care, regardless
of his wishes. His parents have arranged for their estate to be used
to fund a special needs trust for him, but spending from such trusts
must be monitored carefully, particularly if paying for food and
housing. With the lifespan of people who live with Down syndrome
now reaching into their sixties, care must be taken to conserve
Sean’s resources to ensure they are available for many years.
This worst-case is not in keeping with Sean’s wishes for his
life, it is not in keeping with his parents’ plans for him, nor is it
in keeping with the spirit in which he was raised: to be as
independent and responsible for himself as possible.
It is also not in keeping with the faith his parents placed in the
people of Connecticut as they have paid taxes, contributed to the
community and built their life here.
What Can We Do?
Sean and his family are not alone in this scenario. Thousands of
other families are in similar circumstances, or will be in coming
years. In fact, many will face much more dire conditions, because
they do not have the option to purchase a home, or their loved one
does not have employment.
We need to tell our representatives in
Hartford how they can help.
Family Hearing Day -- January 22, 2014
Legislative Office Building, 11 a.m.
• Go to the hearing and tell our legislators about the kind of
support your loved one with Down syndrome might need.
• 20 copies of your testimony are required for distribution to
legislators. Email your testimony to
firstname.lastname@example.org and we will make the
copies for you.
• Make an appointment to meet your representative
immediately following the hearing. Leave a copy of your
• Not everyone will be able to testify, due to time constraints.
Come anyway -- show our legislators that we are serious
about working with them to build a better future for our loved