FAMILY COMES FIRST – THE ALTBACKER FAMILY
INTRODUCTION IN ORDER OF APPEARANCE:
VINCENT J. RUSSO
VICTORIA ROBERTS DROGIN
BOB POLICASTRO
FRANK BUQUICCHIO
ELIZABETH ALTBACKER
CHRIS ALTBACKER
TIMOTHY ALTBACKER
SYDNEY ALTBACKER
MONSIGNOR JAMES McNAMARA
ORIG~
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MR. RUSSO: Welcome everyone to Family Comes
First. I’m Vincent J. Russo.
MS. DROGIN: And I’m Victoria Roberts Drogin.
Thank you for joining us today.
Today we are going to learn about what happens
to our medically-fragile children. The term
generally refers to children who require
complex health procedures, special therapy
or specialized medical equipment or supplies
to enhance or sustain their lives during the day.
MR. RUSSO: That sounds like there are a lot
of issues and challenges there.
Until the 1980s medically-fragile children
were most often cared for in hospitals and then
institutions. Thank God for deinstitutionalization
which started with Willowbrook. This resulted
in children being moved into community settings.
In addition, advances in health care
technology have enabled more children with
special needs to leave hospitals.
MS. DROGIN: Vincent, I know this is
very personal for you.
MR. RUSSO: Sure.
MS. DROGIN: You and your wife, Susan, brought
your daughter, Theresa, home to live with you,
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and as you know more children are leaving
2 hospitals which puts extreme pressure on
3 these families to provide for their children
4 who require more medical equipment and 24-hour
5 specialized care. This all comes at a very
6 high cost; emotionally, physically and
7 financially, and that’s where community
8 organizations like Angela’s House can be a
9 lifesaver.
10 MR. RUSSO: Absolutely, Victoria. Today we
11 will share the Altbacker family with you, Liz
12 and Chris, and there three beautiful children,
13 Kiera, Sydney and Timmy. Their oldest
14 daughter, Kiera, has multiple challenges
15 that require constant medical care. She
16 is medically fragile. The Altbackers brought
17 Kiera home and their lives have never been the
18 same.
19 MS. DROGIN: They are an extraordinary
20 family.
21 MR. RUSSO: Sure.
22 MS. DROGIN: Before we sit down with the
23 Altbackers, however, we are going to present
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a wonderful resource that does amazing work for
25 the families of medically-fragile children.
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Angela’s House helps care for these children
2 living at home with parents or in special homes
3 that offer 24 hour nursing support.
4 We are fortunate enough to have Bob
5 Policastro, the founder of Angela’s House, with
6 us today and your partner, Vincent.
7 MR. RUSSO: Yes.
8 MS. DROGIN: Frank Buquicchio, a special
9 needs planning attorney, who helps families plan
10 for their child with special needs.
11 Before we talk to Bob, however, today we are
12 going to take a tour of Angela’s House.
13 MR. RUSSO: It’s absolutely fantastic.
14 MR. POLICASTRO: We were fortunate
15 because seeing a small setting would be perfect
16 for these kids and then we can do everything in
17 the world possible to make the environment that
18 they live in like their own house, you know,
19 that warm, fuzzy feeling, and it helps the parents
20 a lot because the parents see them in a
21 comfortable home. It’s not this large
22 institution that they feel like their child may
23 get lost in.
When you enter the house we try to be just
25 like you would enter in a regular home. We try
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(~ 1 to have the kind of feel, that formal — not so
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2 much formal for us, but you know, formal living
3 room area, to have a den where the kids can
4 spend most of their time there which is important
5 to us because we didn’t want them in the room.
6 We wanted them to be together. We wanted them
7 to be in a room where they would build
8 camaraderie and that has been to me one of the
9 most beautiful things to witness over the past ten
10 years.
11 We have our kitchen which is right off of the
12 den area and that’s an area that is, you know,
( , 13 where we have all the food that we do for the
14 kids and prepare the meals and any of the
15 special formulas that the kids would need and
16 that’s kind of the main living space.
17 As you walk further into the house that’s
18 where you get into — your first room that you
19 see is the nursing station, the central area
20 which is most important during the nighttime.
21 The rules — we wanted them to be almost
22 beyond what you would see in your own home. As
23 my kids say these are nicer than they would ever
~J 24 see and that was kind of our goal. We wanted
25 them to be very colorful.
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Behind me is a mural that was — it’s a very
festive environment. It’s almost like an
underwater party. The restaurant is behind me
with just fish playing musical instruments
and everybody just being happy.
Our feel is to try to give the children
as much as a normal life as possible. It’s like
a dream come true for us and for the families.
It’s been a challenge because as we’ve
come across more and more families, you know,
we’ve seen that many parents would love and
it’s the initial desire to be able to care
for their kids at home, but they know they need
that support in order to make that possible.
It gets harder, and it saddens me because I see
many of them without an alternative and then
it makes it even more difficult to understand
that there is nothing even planned for them,
and that’s why I refer to it as a crisis because
I don’t see the light at the end of the tunnel
for them.
MR. RUSSO: Thank you so much for joining us
today.
MR. POLICASTRO: Thank you.
MS. DROGIN: Welcome. And I have to say
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after watching that extraordinary piece, the most
powerful moment in looking at that clip for me
was when we walked from the den into the nurse’s
station, and I had this feeling that what
you’ve done is you created a home from a
hospital.
MR. RUSSO: We can’t thank you enough
for all the good work you’re doing and I know
for us, it started with Theresa. For you it
started with Angela.
I’d love to hear more about Angela.
MR. POLICASTRO: Well, the traumatic
experience of her birth is really where
unfortunately it was a horrible twist to
what was going to be a beautiful experience
of having our second child at the time, but we
knew at that point we had an angel and that’s
where we named her being Angela, a beautiful
brown-eyed, dark-haired little girl that meant
the world to me just to hold onto her and just
being in the hospital was not where I wanted
to be. I wanted to be home with her, and
I understood that it’s not where the kids belonged,
and it was my desire to have an experience
where parents wouldn’t be stuck in hospitals.
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(~ \ .0 1 MR. RUSSO: How long did you have Angela?
2 MR. POLICASTRO: It was 13 months after her
3 first birthday and after her first birthday
4 she passed. Unfortunately she was actually up
5 in Connecticut because there was limited resources
‘6 here on Long Island. Actually pretty much
7 across the country being able to care for
8 somebody when they get outside of the hospital.
9 MR. RUSSO: You and your wife had the
10 inner strength and faith to move forward
11 understanding what you went through and not
12 wanting that for other parents and you
/ ( 13 created Angela’s House.
14 MR. POLICASTRO: Like you said before, you
15 have a child like this. You go through that
16 experience. It’s something that you never
17 forget. It’s a world as we were referred to as
18 the new survivors. Kids that people never
19 thought would survive or people that never
20 thought that the technology would be able to
21 be there for them to continue their life and
22 support them.
23 I knew right away that it was going to be
L 24 difficult to try to take her home, and I also
25 didn’t want to see her in the hospital. After
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r 1 she passed I realized that there were very
2 few advocates because even from where I was
3 coming from I didn’t have anybody helping us
4 out, and I knew I had to continue.
5 I knew the parents that I had met in the
6 hospital and the parents I started to meet in
7 the community needed the same thing that my wife
8 and I needed that wasn’t there so that’s when
9 we spent our time just advocating, talking to
10 everyone we could, every elected official that
11 was in the downstate area and said, you know what,
12 we have to change this. These kids should not
(
“- 13 be living in a hospital.
14 MS. DROGIN: You created what you needed.
15 MR. POLICASTRO: Absolutely. And starting
16 from ground zero in a sense we had the
17 opportunity, you know. We didn’t want an
18 institutional-looking situation. We wanted
19 something that made everyone comfortable.
20 Something comfortable for the children.
21 Something comfortable for the families and even
22 the staff, a very home-like, warm environment.
23 MS. DROGIN: You’ve created these residences,
~j 24 which we saw, which are extraordinary, and we
25 would like to hear a little bit about the
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services they provide and also there must be
2 many families who can’t possibly be accommodated
3 within the few houses that exist.
4 Could you tell us about that?
5 MR. POLICASTRO: Yes. We’ve been blessed
6 to have two homes. Actually I’ve worked with
7 a great agency on Long Island to work
8 these homes and IGHL, Independent Group Home
9 Living, and it’s been very important to make it
10 a success, but I’ve also — as the years
11 have gone by I keep on meeting more and
12 more families, and it’s tragic that we don’t
(
13 have more alternatives for these children, but
14 I understand too that what has to happen is we
15 have to support them more coming out of the
16 hospital and then support the parents when
17 they’re home, and it’s a huge undertaking and
18 that’s where we are seeing more and more of the
19 families. The last two years 400 families a
20 year that we are trying to help stabilize.
21 MR. RUSSO: Say that again. How many families?
22 MR. POLICASTRO: 400 families just in this
23 region.
l) 24 MR. RUSSO: Just in this area of Long Island.
25 MR. POLICASTRO: Making a difference because I
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(\ 1 know that it wouldn’t be possible in many cases
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2 for these parents to be able to care for their
3 kids at home without having people there to kind
4 of walk them through the process of helping them
5 get everything from the nursing care in-house to
6 get the funding sources in the home, to get
7 the medical supplies and equipment, therapies and
8 so on. It’s really an overwhelming task to try
9 to even do it alone as a parent.
10 MR. RUSSO: That’s the word overwhelming task,
11 and it all started with this gift from God,
12 Angela. It all started with Angela.
(
13 MR. POLICASTRO: As I said, you know,
14 as tragic as the moment was in my life, the
15 trauma, the devastation that we had experienced
16 at her birth we knew we had an angel and we
17 were blessed. I was blessed with that one year
18 with her and it was fantastic, and I feel
19 that everyday of my life.
20 MR. RUSSO: I know you do. Frank, you are the
21 special needs planner, and you are seeing parents
22 on a regular basis who are coming in the office
23 with their concerns.
24 Could you up front just share what concerns
25 do you hear from these parents?
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0 1 MR. BUQUICCHIO: I think two main concerns
2 and you both touched upon one which is what
3 services are going to be available for my
4 child and how can I afford that, and I think the
5 second and most probably pressing for the parents is
6 what’s going to happen when I’m gone; what’s going
7 to happen to my child; who’s going to take care
8 of my child. Those are their concerns.
9 MR. RUSSO: And that second one is the
10 toughest as Bob and I both know and many parents
11 don’t even want to think about it or are horrified
12 to think about if that was a reality, where would
13 we go with it.
14 Just quickly can you talk about a couple
15 of the planning steps that you would recommend
16 to families.
17 MR. BUQUICCHIO: Sure. Sure. The first
18 thing I do when I meet with parents with a child
19 with special needs is to understand and to listen
20 to what their concerns are and then I advise them
21 of their legal tools.
22 Memorandum of intent is one very important
23 document, and of course, having a Will with
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a supplemental needs trust to protect the child
25 when the parent passes are both very
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important documents.
MR. RUSSO: Terrific.
MS. DROGIN: I know there’s a story, Bob,
as to how you and Vincent met.
Would you both tell us a little bit —
MR. RUSSO: Sure. I’ll start the story which
is I just felt that I needed to know this man
and needed to know all the good work that Bob was
doing so about 18 months ago I called him up
and said let’s go to lunch. We went to a
nice Italian restaurant, of course. We
were talking, and we immediately connected.
Bob was sharing with me the Angel of Hope,
this vision that he had for the Angel of Hope to
be erected on Long Island and the struggles
of having that happen, where would it be, and I
said we are right across from where our
daughters are buried at Holy Rood. We
have Eisenhower Park right here. After lunch
you have to go to Eisenhower Park. Bob.
MR. POLICASTRO: We say good-bye. It was a
great meeting, and I’m sitting in the parking
lot and I said let me go. It’s right here. I
grew up locally. I knew Eisenhower Park. I
took a ride there and as soon as I saw the
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monument area and I saw how beautifully kept it
was, I realized this is it. This is it, and as
I’m there the wildest thing happened. I ended
up meeting a friend of the family that I hadn’t
seen in over 30 years, and he had also been
involved with helping parents and helping groups
getting monuments in the park, and I knew at that
point, without a doubt, that this was the place
that it needs to be because I understood that
parents that have lost children needed to have
this monument that has actually been replicated
in over a hundred areas of the United States.
MR. RUSSO: So today we have the Angel of
Hope.
MS. DROGIN: It was meant to be.
MR. RUSSO: Thank you for being here today and
all the good work that you’re doing.
MS. DROGIN: Thank you both. For more
information on Angela’s House, you can visit
their website at www.angelashouse.org,
and when we come back, we will sit down with the
Altbacker family, truly an inspiring family.
Stay with us.
ELIZABETH ALTBACKER: We found out about
Kiera, that Kiera was going to have medical
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(0 1 problems when I was pregnant with her at 29
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2 weeks. We went for an extra sonogram because
3 I didn’t feel she was moving as much as she had
4 in the past. We were told in the office that she
5 was going to be profoundly disabled when she
6 was born.
7 At three months old Kiera started physical
8 therapy through early intervention. Shortly after
9 that she started occupational therapy, speech
10 therapy and special ed. We had therapists in
11 our house three to four times a day, five days
12 a week.
13 When you find out that your child is
14 different from other children and especially
15 when you find out that they are medically
16 fragile, handicap, you go through a grieving
17 process. You grieve for the child you thought
18 you were going to have, and it takes a long time.
19 For me it took five years because every milestone
20 that Kiera didn’t hit was another time to
21 grieve because you lost that child, but
22 eventually and it happens to different people
23 at different times, eventually you come to accept
\_- 24 it and this is the child you have and you
25 are grateful for the things that she can do.
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n 1 We waited to get pregnant with our second
2 child. We were nervous about what was going
3 to happen but because what happened to Kiera was
4 not genetic, it was not hereditary, the chances
5 of us having a second child with the same thing
6 were very·slim.
7 Having three children in diapers is
8 very difficult, plus the added fact of having
9 nurses, and we were very much fortunate to
10 be supported by our family. Our families live
11 close. We depended on them a lot. If we did
12 not have the help from Angela’s House, we would
13 not have been able to keep Kiera home. We would
14 not have been able to afford the things that we
15 needed to have a normal family life so if it
16 wasn’t for Angela’s House, we would be in a
17 very different situation than we are today.
18 MS. DROGIN: Welcome back to Family
19 Comes First.
20 Today we are talking about taking care
21 of our medically-fragile children.
22 MR. RUSSO: We are now joined by Liz and Chris
23 Altbacker and their family, Kiera, Sydney and
I 24
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Timmy.
25 I know Angela’s House has played an
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1 important role in your life and we had a video
2 of — We literally got a tour of Angela’s House
3 by Bob Policastro.
4 ELIZABETH ALTBACKER: They do what they do
5 very, very well, and Bob is very knowledgeable
6 on all the programs that the states and
7 the local counties and districts offer. He passes
8 that on to his workers.
9 MR. RUSSO: That’s great.
10 CHRIS ALTBACKER: It’s near impossible for a
11 family starting out to even navigate through all
12 the paperwork and the different branches that
13 you have to go through and whatnot and then
14 the caseworkers who were just absolutely
15 phenomenal. These are professionals that know
16 the system, know how things work and can just
17 pinpoint and go directly to where you need to be.
18 It’s just helped immensely.
19 MR. RUSSO: We have the kids here.
20 MS. DROGIN: And I want to talk to you guys.
21 Do you feel like talking a little bit?
22 TIMOTHY ALTBACKER: A little bit. Not much.
23 MS. DROGIN: Well, I was wondering if you
L 24 could tell us a little bit about Kiera and
25 about what makes her happy, what she likes to do.
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I know we talked a little bit about her birthday.
2 What happens on her birthday?
3 TIMOTHY ALTBACKER: She likes to — When
4 we unwrap her presents, she likes to play with
5 the wrapping paper and tear it up and stuff.
6 MS. DROGIN: Sounds good.
7 MR. RUSSO: It makes her smile?
8 TIMOTHY ALTBACKER: Yes.
9 MR. RUSSO: Cool.
10 SYDNEY ALTBACKER: What makes her happy is
11 when you take a towel and you flap it in front
12 of her face and the air makes her smile.
13 MS. DROGIN: Because it feels good. It’s
14 a breeze.
15 Is it hard to find time for yourselves?
16 CHRIS ALTBACKER: Together, yes.
17 ELIZABETH ALTBACKER: It’s nearly impossible.
18 CHRIS ALTBACKER: Usually one of us is
19 attached to the house with Kiera for one extreme
20 or another, yeah, at times. At times it’s harder
21 on one than the other. We take turns taking up
22 the slack and whatnot, but it’s tough to find
23 time together.
24 MS. DROGIN: What are your hopes for Kiera’s
25 future as she gets older?
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( \ 1 ELIZABETH ALTBACKER: I think that we
” –
2 always felt that we just want her to be
3 comfortable. We want to balance medical
4 necessity with her comfort and happiness.
5 MR. RUSSO: I know from my own experiences and
6 representing many families who have children
7 with special needs how expensive all of this can
8 be and how do you manage financially.
9 ELIZABETH ALTBACKER: We were fortunate
10 enough to be in that Care At Home Program
11 which is — well there’s a county level
12 program and then there’s a statewide
13 program. There are different levels of care at
14 home, and without that program our lives would
15 be completely changed.
16 We do have terrific insurance, but it
17 doesn’t cover everything, things like diapers
18 and certain medicines and certain equipment so
19 without the Care At Home Program, which is how we
20 met up with Angela’s House, we would have had to
21 have paid for all of that, the modifications to
22 house, the ramp.
23 CHRIS ALTBACKER: Nursing services.
~->/ 24 ELIZABETH ALTBACKER: Nursing services.
25 MR. RUSSO: Talk about the services you get
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1 through Care At Home.
2 CHRIS ALTBACKER: You can quickly go into
3 severe debt.
4 ELIZABETH ALTBACKER: Yeah. Care At Home,
5 it depends on what level you’re in, but in
6 a nutshell, they help you modify your house to
7 make it wheelchair accessible. They help
8 modify your bathroom. They’ve also helped us get
9 a hospital bed, various wheelchairs. Eventually
10 we’ll need a chairlift into our car, and they’ll
11 help with that.
12 MR. RUSSO: There are different levels which
13 you’ve mentioned, and there are different
14 eligibility rules that apply under
15 Medicaid and these programs are called
16 waiver programs and parents can have some
17 assets and income and still be eligible.
18 ELIZABETH ALTBACKER: The Care At Home Program
19 is based on the child’s disability, not on the
20 child’s income or the parents’ income.
21 MR. RUSSO: That’s right. So for those who
22 are watching who have a child like Kiera, it’s
23 important that they apply for benefits.
(-) 24 Don’t automatically assume you’re not eligible
25 for them because you may find that there are
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services and those services are critical like
\
2 you’ve mentioned.
3 What does it mean for the two of you having
4 the family that you have today?
5 That’s a big question, right?
6 ELIZABETH ALTBACKER: I think we held
7 our breath for a while.
8 CHRIS ALTBACKER: Yeah. I think it was a
9 little easier cause Kiera was the first, for
10 me especially. I didn’t know any different, you
11 know, so for Sydney and Timmy to come along are
12 two other blessings and with their ranges —
13 everything their milestones, you’re just like
14 wow, you know, wow, wow, wow, you know, and then
15 it was just — it was definitely a decision.
16 We always said we wanted to have more kids.
17 It wasn’t going to hold us back.
18 ELIZABETH ALTBACKER: Having that I think it
19 saved us because it’s a lot of work. You are
20 not only a parent. You’re a doctor. You’re a
21 nurse. And Sydney and Timmy they bring so
22 much happiness to us. It was important to have
23 them.
“‘
24 MR. RUSSO: If there is one message that you
/
25 could send to our viewers who have a family
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1 similar to yours with a child who is
2 medically fragile, what message would mom and dad
3 like to send?
4 CHRIS ALTBACKER: I would say life is what
5 you make of it. You can let it bring you down and
6 you can stay inside and you can board yourself
7 up or you can go out and do things and, you know,
8 do things with your child and everything like
9 that and, you know, we are that much richer
10 for it because we did.
11 There are times, yeah, where you are tied
12 to the house, but there are other times where
13 you’re out and about. She loves to go to
14 the supermarket, and she loves to go to the
15 soccer games on Sunday and stuff like that.
16 You know, life is what you make of it. If you’re
17 dealt lemons, make lemonade.
18 MR. RUSSO: Thank you so much for sharing
19 your family and your story and I know that many
20 of our viewers are going to be inspired, and I
21 can’t thank you enough, and Sydney and Timmy,
22 thanks so much for joining us. It’s been great.
23 ELIZABETH ALTBACKER: Thank you.
f I 24
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CHRIS ALTBACKER: Thank you.
25 MS. DROGIN: You have a wonderful family.
Page 23
n 1 ELIZABETH ALTBACKER: Thank you.
2 MS. DROGIN: Now, we are going to turn
3 to Monsignor McNamara for a spiritual
4 reflection.
5 MONSIGNOR McNAMARA: Liz and Chris
6 experienced the trauma of their first child
7 born profoundly disabled. They obviously
8 love her very much, but they face challenges not
9 only with Kiera but with a plan to have
10 more children.
11 I was very touched by Liz’s realistic
12 statement that you grieve for the child you
(
~ 13 thought you were going to have. Eventually
14 she rejoices in the things that Kiera is capable
15 of doing.
16 They find support with other families and
17 through the services of Angela’s House, a safe
18 place that enables them to keep Kiera at home and
19 to receive some respite for themselves.
20 Here at Holy Cross we have a wonderful
21 program called Faith and Light where families
22 meet for mutual support on the first Friday of
23 every month and come to pray together.
L 24 It’s a beautiful group just as the Altbacker
25 family is a beautiful family.
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(~ 1 God bless them.
, .
2 MS. DROGIN: When a child has profound
3 disabilities and complex medical needs, providing
4 the needed round-the-clock care can be exhausting
5 and overwhelming.
6 Though sometimes it may seem daunting,
7 with the love and support of family children
8 who are medically fragile can grow and thrive
9 at home.
10 MR. RUSSO: And it’s certainly true, Victoria,
11 and it’s certainly evidenced by the Altbacker
12 family. They show that a loving family is the
( 13 best medicine for Kiera.
14 MS. DROGIN: That’s right, Vincent. And
15 with help from organizations like Angela’s House
16 and your law firm, families can continue to
17 provide a loving home for their children.
18 For more information on resources for
19 special needs please visit www.vjrussolaw.com.
20 MR. RUSSO: And for more information on
21 Angela’s House go to www.angelashouse.org.
22 MS. DROGIN: And I would like to add one
23 more resource, the Theresa Foundation at
l 24 www.theresafoundation.org started in honor of
25 your Theresa.
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MR. RUSSO: I very much appreciate that.
‘.
2 Our Theresa Foundation supports music, dance,
3 art and recreation programs, and we’ve opened
4 the Theresa Academy of Performing Arts for
5 children with special needs in Lido Beach.
6 For more information call the foundation
7 at (516) 432-0200.
8 MS. DROGIN: It is truly a joyful and
9 inspiring place.
10 Today our hearts have been touched by
11 Kiera and her loving family.
12 MR. RUSSO: It makes me happy to know that we
( (
13 are all one big family, helping each other.
14 Thanks to all our viewers for joining us
15 today and remember family truly does come first.
16