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MR. RUSSO: Welcome everyone to Family
Comes First.
I’m Vincent J. Russo.
MS. DROGIN: And I’m victoria Roberts
Thank you for joining us today.
When a child is born with special
needs, it’s usually the parents that bear
responsibility for that child, but what happens
when the parents are no longer living or able
to take care of their child. Is it then the
siblings’ responsibility; are they available,
willing, available?
MR. RUSSO: Important questions, Victoria.
In my special needs practice we meet with
many families who plan for the future, but
unfortunately many more deal with these issues
in crisis.
It all starts with family and the
relationships that are created from birth. When
the parents pass away or are in failing health,
the siblings, or one of them, will be asked to step
up to the plate. This is the time when the
siblings are truly tested.
I’ve seen the love and dedication of siblings
Page 3
P 1
\,. ,
for their brother or sister with special
2 needs, helping their brother or sister live
3 with dignity.
4 MS. DROGIN: You know, Vincent, when we
5 talk about children and siblings, just as
6 daughters are usually the family members who
7 care for their aging parents, sisters are
8 usually the family members who look after
9 siblings with special needs when the parents no
10 longer can.
11 Today we will share the story of one sister
12 who has taken on the role of guardian for her

( .. 13 brother with special needs.
14 MR. RUSSO: Yes, Victoria. Rebecca Kooper
15 is a loving and caring sister to her brother,
16 Billy. There were times she not only had to
17 see to her brother’s needs but also the needs of
18 her father, Max, who had dementia.
19 Rebecca became Billy’s guardian after the
20 death of her parents.
21 MS. DROGIN: It must have been very
22 difficult for her. However, she did not have
23 to go it alone. There are organizations out there
L) 24 to help siblings like Rebecca.
25 And joining us today is Aaron Liebowitz,
Page 4
n 1 the Executive Director of Adults and Children
2 with Learning and Developmental Disabilities,
3 ACLD, and Vincent’s partner, Frank Buquicchio,
4 of Vincent J. Russo & Associates, P.C.
5 who is a special needs planning attorney.
6 MR. RUSSO: Thank you so much for joining us
7 today.
8 I’m going to start with you, Aaron, and I
9 would like you to first talk about your
10 organization, ACLD.
11 MR. LIEBOWITZ: Well, ACLD, like many of the
12 organizations serving individuals with developmental
\ , 13 disabilities, was actually started by families
14 in the late 1950s. It’s grown into a
15 multi-service organization that offers
16 medical and psychiatric care, residential
17 homes and apartments, day services, early
18 childhood education, recreational services,
19 really expanding the whole range of ages and
20 needs.
21 MR. RUSSO: That’s a mouthful. What a list
22 of services you just gave us.
23 How many people are you serving?
lj 24 MR. LIEBOWITZ: About 3,000 at any given
25 point. Some with comprehensive services,
Page 5
~ 1 24 hours a day, seven days a week and others
2 who come for particular services, medical, job
3 services, service coordination so people use
4 us in different ways.
5 MS. DROGIN: Frank, I have a question for
6 you on the legal side of the issue.
7 Who has the right to make decisions for
8 an adult with special needs?
9 Is it automatically the parent, and if not
10 the parent, is it automatically the sibling?
11 MR. BUQUICCHIO: No, nothing is automatic
12 in this area. Under New York law once we turn
( 13 age 18, we are presumed to be competent adults.
14 .For those who are unable to make those decisions,
15 however, then we have to go for a guardianship.
16 A guardianship is going to be two parts
17 essentially. There’s guardian of the person
18 which will allow for heath-care decision making,
19 things like housing, personal types of needs
20 and then there’s guardian of the property which
21 deals with financial matters and the person’s
22 assets.
23 MS. DROGIN: At what point should a parent
L 24 or a sibling consider seeking advice on a
25 guardian or putting one into place?
n 1
( 13
L) 24
MR. BUQUICCHIO: If we are talking
about somebody who is under 17, somebody
developmentally disabled mentally or cognitively,
as an example, I think probably about six months
before their eighteenth birthday would be a
good idea to start the process because
there’s paperwork involved, there’s court
hearings so you want to have as little delay
as possible once you hit 18.
MS. DROGIN: No gaps.
MR. BUQUICCHIO: You want to hit the ground
If we are talking about an adult who lacks
capacity and we don’t have a guardianship in place
already, then I think they should be doing it now,
MS. DROGIN: Immediately.
MR. BUQUICCHIO: Absolutely because right now
with no guardianship if you have somebody that
lacks capacity to make decisions for themselves,
there is nobody legally who can do that for
MS. DROGIN: Terrific. Aaron, at what
point should a family start thinking about
housing and placement and those types of options?
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L) 24
MR. LIEBOWITZ: Consistent with what Frank
is indicating, it needs to start earlier than
most people really begin thinking about it.
When families have children in secondary
schools, they are really immersed in that world
of education and educational placement issues,
but that’s really the time to begin to think
about the transition, the transition from school
to adulthood because there are very significant
changes in systems and support and availability
of programs and services. It’s very different
than their experience with the educational system
so I would say by 15 or 16 years of age families
should begin thinking about that. They should
make themselves known to the Office of Mental
Retardation and Developmental Disabilities that
they will be having needs. It may not be
immediately residential but at least they are
listed as people who are registered for their
services. They need to familiarize themselves
with the range.
We are blessed here on Long Island with
many excellent organizations like ACLD who do
work with people with developmental disabilities
so ‘there are organizations close to home that
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n 1
\ ‘
you can be in contact with and become involved
2 with so I think the process begins early, and
3 it’s an evolving process that each individual
4 family has to find their unique access point and’
5 how they use those services.
6 MR. RUSSO: And I can see at a practical
7 level, the challenges that parents face when
8 they have a child with special needs living at
9 home into their adulthood and they want them
10 to be home, but they are also concerned if
11 something happens to them, the child my need to
12 live somewhere else, and there’s this back and
13 forth. And I’m sure you run into that.
14 Any tips that you would give the parents on
15 how to deal with this?
16 MR. LIEBOWITZ: There are services and
17 supports for both styles of managing
18 family life with an individual with special
19 needs. Many families are not prepared at age
20 21 or 25 to do an out-of-home placement and for
21 those individuals who want to keep their loved
22 ones home, there are push-in services, at home
23 residential rehabilitation where support
L) 24 individual professionals come into the home,
25 respite services that give families a break
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n 1 to be able to go away for a weekend or go
2 shopping, take care of other family needs so
3 those are available, and it’s really a blessing
4 when families need that.
5 But at the same time, they need to prepare
6 for the longer runs and that means getting on lists
7 with organizations and with the state agency to
8 make it known that your intention is within
9 three years or five years or whatever the
10 family chooses, that you are interested in
11 out-.of-home residential placement.
12 It’s not unusual for people to wait a
\ 13 good number of years before the right placement
14 becomes available.
15 MR. RUSSO: Great. I want to thank both of
16 you so much for taking the time to be with us and
17 thank you, Aaron, in your organization, ACLD, for
18 all the good work that they do.
19 For more information on ACLD, you can go
20 to their website at www.acld.org.
21 When we come back we will sit down with
22 Rebecca Kooper who will share her story.
23 Stay with us.
LI ) 24 MS. KOOPER: We were a very typical family.
25 It was my parents moved out to Long Island
o 1
post World War II. I have three brothers, and
2 we grew up in Elmont and just had a very typical
3 early childhood which was fun and free and easy.
4 I was three and a half years old when
5 my brothers were born. They were born two
6 months premature so they were in the hospital for
7 around two months until they got to be around
8 five pounds weight to come home. I was excited
9 to have two little brothers and looking forward to
10 watching them grow up.
11 She first became suspicious that something
12 was wrong with Billy when he was around a year
13 old. She thought he was deaf because he was
14 not responsive so she took him to be tested and
15 they ruled out deafness but then that left
16 them with this big question, what is it because
17 they had no idea what was wrong with him.
18 When I was going over the photos again
19 looking at them as an adult, and I haven’t
20 looked at them for a long time, I was struck by
21 the lack of expression in my brother’s
22 face consistently. I never saw a photo where he
23 was engaged, where he was looking at anybody, and
24 it was sad for me to see that he was probably
25 very disconnected and again probably everyone
Page 10
,~ 1
( .,
else did know, but I guess there’s something
2 nice about having positive memories, but
3 looking back, it was sad.
4 The first time I was aware that there was
5 a problem was when he stopped eating and went
6 into a coma, and they couldn’t wake him up.
7 That’s when it started going in and out
8 of hospitals for probably a year or so. I’m
9 not sure and then when he went to Rockland
10 State Hospital where he ended up living for
11 a long period of time. I was told it was a
12 hospital so I just thought it was just one
13 more hospital and then eventually he would come
14 home again.
\_/ 24
Once as a teenager I asked my mother. And I
was driving home, and I was just so upset, and
I didn’t want to say anything because I knew
my mother, and I just started crying and I just
said, why is he here, and I kind of saw the pain
on her face, and I knew I shouldn’t have asked.
She just said I have no choice.
One day I was at a hairdresser and the
woman who was doing my hair told me her husband
was a social worker and he was instrumental
in starting group homes with people who were
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( 13
ly 24
living in state institutions so I went home, told
my mother and within a nanosecond she was on
it, making arrangements for my brother to go into
a group home.
They were calling it different things then.
They were calling it profoundly retarded.
They were calling it even schizophrenia. They
were calling it neurologically severe,
neurological damage. They were calling it
different names during different decades so it
didn’t matter what you called it, it was just
somebody who was very low functioning and was
just — was never going to be able to
really communicate and take care of themselves
and would always need a lot of help so I
knew I had a severely impaired brother.
As you see in this picture, we’ve gotten
together for Billy’s birthday because it’s good
for all of us to just have a sense of family.
He’s still in our family. He knows somehow that
we are family members. He doesn’t know a sister
or a brother or a father, but he knows we’ve
been around for a long time. When we go to visit
there’s definitely a look of recognition, and it’s
something extra that’s in his life that will
Page 12
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~ 1 . always be there. We’re the constant.
2 MS. DROGIN: Welcome back to Family Comes
3 First.
4 Today we are exploring siblings taking care
5 of an adult sibling with special needs.
6 MR. RUSSO: We are now joined by Rebecca
7 Kooper, who has taken on the responsibility
8 for her brother, Billy, who has special needs.
9 Rebecca, it’s so good to have you on the
10 show.
11 MS. KOOPER: Thank you. Thanks for having
12 me.
13 MR. RUSSO: We’ve known each other a long
14 time. It really truly has been my
15 privilege to provide the legal services and
16 support through the years for your dad and
17 your family, and I really truly miss your
18 father, Max. He was such a gentleman, a live
19 wire, and I’m sure a loving father for you.
20 MS. KOOPER: Yes.
21 MR. RUSSO: I just wanted to throw that in
22 there because I think of him often really. We
23 get attached to our clients, and he was a special
~.,I 24
25 And I know it was really difficult for you
Page 14
n 1 when he was in declining health with dementia
2 and you also had to step in and take on that
3 responsibility of overseeing the care of Billy.
4 Can you talk a little about the challenges
5 that you faced at that time?
6 MS. KOOPER: Well, I do refer to that
7 as my difficult decade. It was a horrible time
8 for me emotionally having lost my mother and then
9 my father’s decline and realizing that I would
10 be handed the baton to take care of Billy. It was
11 difficult.
12 MR. RUSSO: And you were working at the time,
13 as well, right?
14 MS. KOOPER: I was working at the time, yes.
15 MR. RUSSO: They talk about that sandwich
16 generation of parent and child. Your sandwich
17 was your parents and your siblings, and there
18 are more and more people who are finding
19 themselves in that situation.
20 MS. KOOPER: Yeah. It was confusing. It was
21 overwhelming. I had one parent in one type of
22 facility and a brother in another type of facility,
23 and I was visiting both in each facility, and
C; 24
hopefully I showed up at the right person in
25 the right place.
Page 15
n ~ . ,
1 MR. RUSSO: Right.
2 MS. KOOPER: It was hard. It was difficult,
3 and it’s something that you have to do when you
4 are presented with the situation.
5 MS. DROGIN: What planning was implemented
6 by your parents to arrange for Billy’s care
7 before they passed?
8 MS. KOOPER: Well, my mother had brilliantly
9 found out about group homes and had him placed in a
10 group home. I am a group home fan. They are
11 phenomenal. They are caring. They really
12 just manage his life so that I don’t have to
13 worry about his care. I manage his care through
14 them. We meet often. I call over. If there is a
15 problem, they call me. I am his guardian for
16 his health care needs, and I have to be
17 involved with any kind of medical decisions.
18 MS. DROGIN: Did you know that you were going
19 to be stepping into this role before?
20 Did you have any idea of what it would be
21 like from your parents?
22 MS. KOOPER: I didn’t even think about it
23 when I was younger. It was — having grown up
24 with it at around — when I was a teenager, I
25 stopped visiting for quite a few years just to
take a break because that’s when I started
realizing the severity of the situation, and I,
you know, my parents would talk about the visits,
and I would listen, but I really wasn’t too
involved. Then my mother one day said to me out of
nowhere, I think it’s time for you to come see
Billy in the group home. There’s going to be a
picnic. It would be nice. It would be pleasant,
and it’s time. And I wanted to say no, but I
said yes. And I went, and my mother passed away
a few months later.
MR. RUSSO: So you were selected.
MS. KOOPER: I was selected as this woman, this
female which seems to be the ones who step up
most of the time.
MR. RUSSO: So did your mother have any
conversations directly with you before she
passed saying that, Rebecca, I really need for
you to show an ongoing interest for Billy on
behalf of the family?
MS. KOOPER: You know what, we never
talked about things and that’s a regret that I
23 have as an adult, but it was an issue that was
24 never talked about, just that decade — there are
25 no words for it, but I think it was too painful
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L) 24
for them. I was certainly not bringing anything
up. I can go through life — if you don’t want
to talk about it, it’s okay with me and because
my mother died, as you know, suddenly. She was
not sick. There wasn’t a time for her to say I’m
getting sick. I think we need to talk. Maybe
she knew by having me come and visit and breaking
down that barrier of me never having gone into a
facility where he was living.
In the beginning it was hard. I remember
and it’s a beautiful home, but my heart would
just beat because it was like going into an
institution. It wasn’t but my body was
conditioned, and it took many years before
that feeling went away. It’s hard.
MS. DROGIN: How has ACLD helped Billy?
MS. KOOPER: ACLD has saved my life and
Billy too. They are just there for
him. They take over everything. I’m always
impressed with their level of care and planning
ahead for the next step.
MR. RUSSO: What kind of needs does Billy
have, and how do you ensure that those needs
are being taken care of?
MS. KOOPER: Well, he’s very low functioning.
Page 17
Page 18
r’ 1 In terms of his needs, it’s really his care and
2 his safety and his well-being. And I know he’s
3 well cared for. Because he is non-verbal, you
4 really look at his reaction to people to know if
5 he likes them or not. When people go by him if
6 he reaches out to them, I know he likes them. He
7 does that to the people who are there. I know
8 he’s well cared for and that’s all I want, is for
9 him to be safe and well cared for.
10 MR. RUSSO: I’m going to shift gears a little
11 because I always have that lawyers hat on.
12 What does it mean to you to be a legal
> 13 guardian of Billy?
14 MS. KOOPER: What it means to me is that
15 they really can’t make any decisions about his
16 care, his health care, without consulting me so
17 any important decisions that have to be
18 made, especially in the future, I know we can
19 discuss it and it won’t be oh, we’ve got to call
20 his sister. It’s oh, we have to call his sister
21 before we can move on.
22 MR. RUSSO: So you’re the guardian of the
23 person.
l / 24
25 MR. RUSSO: You’re the advocate supervising
n 1
L/ 24
Billy’s well-being.
Tell us when did you step in to be the
legal guardian and why was — talk about the
process. Why was it important?
MS. KOOPER: The process was done by you, if
I recall.
MR. RUSSO: Yes, it was.
MS. KOOPER: It was right immediately after
my father’s death and you were settling his
affairs, and you said to me so what about
Billy’s guardianship, and I said, no, I think
I’ll take a break because I just took care of
my father for a few years, and you said, no, we
really need to talk about it. I asked you why and
you said if anything dire happens to Billy
without having guardianship, the doctors can
do whatever they deem useful or important or
beneficial regardless of what my feelings would
be and that made me very nervous, and I said,
okay, I’ll do it, and we went ahead and drew
up the papers, and I became guardian.
MR. RUSSO: And I recall that soon thereafter
an important decision had to be made and so I
know it was important for you to have that.
MS. KOOPER: It was perfect timing and as
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L/ 24
much as I was not happy with you at the beginning
for bringing it up.
MR. RUSSO: You weren’t happy with me?
MS. DROGIN: It’s hard to believe.
MR. RUSSO: It was the information you were
telling me.
MR. RUSSO: Right.
MS. KOOPER: But I was very grateful when
that incident came up, and the doctor — we
disagreed, and I made a decision with the advice
of the people who know Billy best, his caregivers,
and some nurses there to go against the doctor’s
recommendation, and he was not happy with me, but
he had to listen to what I said. It worked out
fine, that by not doing this invasive procedure,
Billy was okay and he was better than he would
have been with the decision.
MR. RUSSO: That’s a message I’m so glad you
shared with us because there are so many
families out there who say, we don’t need
legal guardians. Things are fine. People
make decisions now and they’ll just do it, and
we don’t have to worry about it.
MS. DROGIN: It’s critical.
MS. KOOPER: Parents need to become
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0 1 guardians of their own children and they often
, ,
2 don’t know that, but doctors are more
3 willing to listen to parents rather than siblings
4 so it’s much more important for a sibling to
5 get that piece of paper. Well, I do
6 encourage parents to get it. If they don’t, it’s
7 not as difficult than it would be for a sibling.
8 MS. DROGIN: Rebecca, what suggestions or
9 advice would you have for other siblings who are
10 in your position?
11 MS. KOOPER: I would not give any advice
12 to any sibling in my situation because we are all
\ 13 so different. We’ve all had different pasts.
14 We’ve all had different journeys. Some
15 siblings can’t take care of their sibling or
16 can’t be involved for whatever experiences that
17 they had, some take them into their home
18 for whatever experience they’ve had, and it’s
19 all so different. No one is right and no one
20 is wrong. It just is, and everyone is fine
21 in deciding whatever they decide.
22 MR. RUSSO: I just feel that you take
23 your job very seriously. You were asked to step
~) 24 up to the plate, and you did and you may not
25 like what I’m going to say, but you’re a role
n 1

L) 24
model for other siblings, and I really appreciate
all that you’re doing for your brother and your
family and sharing your story with us because
it allows other viewers to not feel alone, to
know that they can step in, like you stepped in
and it’s not easy. That’s the reality of it,
but you’ve done it, and I know there is lot of
love there so thank you just so much for
sharing this.
MS. KOOPER: You’re welcome.
MS. DROGIN: Thank you and for being so
MR. RUSSO: Absolutely.
MS. DROGIN: And now let’s check in with
Monsignor McNamara for a spiritual reflection.
MONSIGNOR McNAMARA: This woman has faced
beautifully about the slow and perhaps sudden
realization that one of her twin brothers
is disabled.
It’s every parent’s prayer to give birth
to a healthy child.
The Kooper family had to deal with the
fact that Billy was disabled. He ended up
in an institution, not because his parents
didn’t care, but because they had no choice.
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0 1 Thank God that we have today group homes that
\ c.
2 enable young people with disabilities and
3 young adults to live with their peers and face
4 the challenges that are particular to them.
5 Many parents care for disabled children into
6 their elderly years, but there comes a day when
7 they must face the fact that they can no longer
8 do so.
9 Thank God we have group homes to provide a
10 family setting for these beautiful people.
11 MS. DROGIN: People with disabilities
12 are living longer than ever before, outliving
13 their parents. Over 65 percent of adults
14 with mental illness and 80 percent of adults
15 with developmental disabilities live with
16 their parents, most of whom are in their 60s,
17 70s and 80s.
18 MR. RUSSO: And 90s.
19 MS. DROGIN: And 90s.
20 MR. RUSSO: And once the parents pass away,
21 it’s usually up to the adult siblings to take
22 care of their brother or sister, but there are
23 many community resources available such as
Li 24 ACLD and special needs planning attorneys
25 who are available to help.
r 1
>. .

Page 24
MS. DROGIN: For your information on
these resources for taking care of adult
siblings with special needs please visit
www.acld.org, and your law firm, Vincent.
MR. RUSSO: Thank you.
MS. DROGIN: www.vjrussolaw.com. And thank
goodness for our families who better to turn to
for help.
MR. RUSSO: Victoria, you are so right and
it’s all about family.
Thanks to all our viewers for joining us
today and remember family truly does come

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