April 28, 2025 • 39 mins
Hosts Meghan (Smallwood) and Patrick (Cadigan) have gone back and combined two previous discussions about Maryland's Developmental Disabilities Administration (DDA) and, at the same time, cleaned up the audio a bit. We emphasize the importance of completing a DDA application by age 14, including necessary documentation. We cover how the application process involves assessment and determining the young adult's support needs. We work to explain the difference between entitlement and eligibility, the various waivers (Community Pathways, Community Supports), and the importance of a person-centered plan. We also highlight the role of the Coordinator of Community Services (CCS) and the need for timely submission of documents to ensure smooth transitions and support. Join the conversation!
Keywords:
Developmental Disabilities Administration, application, meaningful day, residential supports, IEP, psychological assessments, medical records, crisis resolution, crisis prevention, family supports waiver, Community First Choice, person-centered planning, day programs, self-directed options
Links:
What is Developmental Disability Agencies (page)
Find your Developmental Disability Agency (link)
Adult Agency Snapshot (page)
Maryland (specific) Links/Supports:
Person Centered Planning (site)
Developmental Disabilities Administration (site)
DDA Application Process (site)
Completing the DDA Application (parent resource page)
Family Supports Waiver (site)
LISS Supports (site)
Community First Choice (site)
Coordinator of Community Service (site)
To download a copy of a transcript for this episode or any of our previous conversations, click here.
Also visit our Podcast webpage to find links to all of our other discussions; go to www.p2transition.com.
Additional information about post-secondary transition can be found at our website.
The Post-Secondary Transition Podcast Facebook page.
Visit our YouTube Channel to find additional video resources.
Intro/Outro music by AudioCoffee from Pixabay.
Transition music by Joseph McDade from Transistor.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Patrick Cadigan (00:00):
It just seems Meghan, like we keep coming
back, we keep hitting the recordbutton, and we keep talking. So
I guess that's where we are.
Meghan Smallwood (00:08):
It feels like we were just here.
Patrick Cadigan (00:11):
Yeah, Gee. I wonder where that came from.
Hello. I am Patrick Cadigan. Iam a public school special
education teacher. Who is my cohost?
Meghan Smallwood (00:19):
I am Meghan Smallwood, and I'm a public
school transition coordinator,and we are here for Post
Secondary Transition. Over thelast few conversations, we
talked about how we decided wewere going to do some 101 style
conversations to essentiallyintroduce parents to the world
of secondary transition, and,more specifically, Post
Secondary Transition. So we'recontinuing our way up that
(00:42):
ladder, and now we're going tocover the big one; DDA.
Patrick Cadigan (00:46):
Yeah, the big one,
Meghan Smallwood (00:48):
The big one.
Patrick Cadigan (00:49):
Why don't we start with what is DDA?
Meghan Smallwood (00:52):
Yeah. So DDA is basically that primary state
agency that funds life after 21that long term funding not to
say there aren't differentavenues prior to 21 but the big
concern I think most of us haveat this point is after 21 and
(01:13):
that could include, like, ameaningful day, whether it's
employment, volunteering orcommunity exploration, It's very
individualized whatever is thebest fit for your young adult.
It could also includeresidential and personal
supports, but we will definitelyget more into that those details
as we go along. All right, so,and I know that this has come up
(01:36):
more than once, but it's alwaysgood to do you know, ask some of
the same questions again andagain, just as a reminder for
parents to hear know what'scoming up. When should a DDA
application first be completed?
So we advise to be completed atage 14, which is when those
transition pages first beginappearing on the IEP in our
(01:57):
county. But you can complete iteven before then. And I know
many parents who have used otherresources or providers you know,
especially when a child is firstdiagnosed, especially with
autism, many of the people thatthey come into their lives to
help them will suggestcompleting a DDA application.
(02:18):
Just get it off your plate andtaken care of. So there's no
harm in doing it prior, butdefinitely by 14, and the
application can be found on DDAwebsite. Or if you were in high
school, you can ask yourtransition specialist for a
copy. And even if you're not inhigh school, if your young adult
is in middle school, you canstill ask the case manager, and
(02:41):
they can always get in touchwith coordinating Transition
Specialists for the high schoolsin the area.
Some details in completing theapplication, you need to make
sure to include certaindocumentation with that
application. The applicationdoes not take long. It's just
couple pages, basically askingstraight forward information,
(03:02):
what the disability is, how muchhelp they need, what other
agencies you may have beenreceiving help from already, but
the advice straight from DDA hasbeen to send those applications
and documentationelectronically. Man, if I
remember correctly, that wassomething that you had
recommended out before, simplybecause some of those
(03:25):
applications, they can get lost,right? Yes, absolutely. And that
happened a lot during thepandemic. I had families who
completed it, mailed in hardcopies, and once you know, life
somewhat resumed to normaloperations. DDA did not have any
record of it, so it was likestarting over. So definitely
send it electronically with thatdocumentation, like I mentioned.
(03:48):
And when I say documentation,I'm talking psychological
assessments, any medical recordsthat really explain the severity
of a disability, the IEP, abehavior plan, educational
assessment, and if you have anyquestions, or if you need
copies, you can definitely askyour transition specialist for
(04:09):
help with that, but definitelysend that along with the
application. Well, and I knowthat it's come up before. One of
the things that I feel like wasmentioned when we discussed
timelines was that, like withthe evaluations, that while
you're collecting it, whileyou're making this binder, this,
this home folder, thatdocumentation should be within
three years, and I remember itspecifically in terms of, like,
(04:31):
psychological but it does thatalso apply to like the like, the
healthcare information as well.
Yeah, absolutely. And I thinkwhen they actually do the
assessment or talk a littlemore. And I know with other
different resources too, likeI'm thinking SSI, they want to
know within the last three yearsof any hospitalizations, major
surgeries, things like that,just to document how recent any
(04:52):
medical concerns have been. So Iwill say. And if we don't have
it already, maybe we can includethe email address for the
central region as to where tosend the applications for DDA.
Patrick Cadigan (05:10):
I am not 100% sure that that is on the site.
By the time we're done with thisconversation, it will be. And
the other thing is, if Iremember correctly, because I
know that sometimes navigatingthe DDA site itself can be a
little daunting. We also have acopy of the application on our
what is DDA page, so you canjust travel there, and it's very
(05:34):
straightforward. There's not alot of stuff there. So, and then
as far as the email address,yeah, I'm gonna throw that in
there, too.
Meghan Smallwood (05:42):
Awesome. And that is specifically for our
central region, which our countyis included. If you need to know
of other counties and whatregion they fall into, that can
be found on the actually, on theapp, the application, the last
page of the DDA application. AndI will say we also have the DDA
application, or DDA has it inSpanish as well. I think that
that's that is up on our side aswell. So good stuff. We are so
(06:05):
helpful. Look at that. Look atus saving the world one document
at a time. So after you completethat application and send it
along, I advise parents to writethe date on the top of your
application or on a sticky alongwith what documentation you sent
with the application, just tohave it on hand, because I know
(06:28):
previously, I've had parentssend it, and I would put a copy
in the transition file atschool, and we would not hear
anything from DDA, and I wouldgo and check with the
eligibility specialist, whowould say, we don't have any
application on file for thatstudent. And I remember one
scenario where I was actuallyable to go back and see, oh no,
(06:48):
this application for you know,John Smith was sent on March 12
with this documentation, and loand behold, an email came back.
Oh yes, we've found thatapplication.
As we all know, it's not aperfect system. Keep records and
don't be afraid to be thesqueaky wheel. Since the
pandemic, I think we thetransition specialist parents.
(07:10):
We've all seen that needs tohappen, and you need to be your
biggest, the biggest advocatefor your child. And then so once
the application has beensubmitted, what's the next step
in the process? Like, how? Like,essentially, how would What's
the guarantee that the familieswould find out that their that
their application was received?
So once the application's beensubmitted, usually within a
(07:30):
couple weeks, you should get aletter, typically a letter from
DDA. So just be mindful of yourmail, because a lot of times the
DDA will come back and say, Ohno, we sent a letter we never
heard from the family. And Ishould say, Be Found mindful of
that timeline, because DDA saidwe sent it and parents haven't
(07:51):
gotten and I find that kind ofodd. You can always ask your
transition specialist to help,help reach out, figure out who
to go to if they haven't heardanything. Is that letter or the
packet that they receive?
Patrick Cadigan (08:06):
Is that specific to the families, or is
that something that is it likegives you general information?
Meghan Smallwood (08:12):
I am glad you said that, because it is a very
generic letter. Whether it is toset up, I'm ahead of myself, the
generic letter will be sentafter they make a determination,
and that can be very confusing,but ahead of that, you will get
a letter saying that they wantto complete a comprehensive
assessment with you and youryoung adult, and that is when
(08:34):
you will actually have acoordinator come to your house,
and it's a random coordinatorjust assigned to the case, and
they have to meet your youngadult and meet with you, and
just make sure everything thatthey read about them on paper
fits what they are seeing andhearing, and just to clarify how
much need really is necessaryfor this young adult,
(08:55):
especially, you know, as theyget older, and I know thinking
about, like the IEP process, welike to come forward and, you
know, review all of thestrengths and progress that our
child has made during the yearwith DDA. It's the opposite. You
really want to think about yourchild on one of their hardest
days and let them know just howmuch help they would need to get
(09:16):
by and how much help you wouldneed to get by. They need to
know the most amount of supportthat would help this person have
a meaningful life after 21.
Patrick Cadigan (09:26):
And I know that this has come up before the DDA
is typically funding for after21. My thoughts go to, is there
anything that will help parentslike right now?
Meghan Smallwood (09:37):
Yeah, so, and I've encountered this a lot,
especially since the pandemic.
You know, it's been hard on alot of families, and help is
needed. It's all great to fillout an application for DDA, but
then to hear that it's notreally until after 21 it's kind
of disheartening. So like I saidbefore, there are circumstances
prior to 21 that funding couldbe available, and from DDA side.
There is the family supportswaiver, which could be for
(10:01):
children and the families, butit requires certain statuses,
which would be either crisisresolution or crisis prevention.
Patrick Cadigan (10:12):
Oh, that...
Meghan Smallwood (10:13):
Yes.
Patrick Cadigan (10:14):
...that sounds pretty okay. So what is, how
would you define crisisresolution?
Meghan Smallwood (10:19):
So DDA's eyes crisis resolution is when there
is a significant crisis presentand services are needed right
away, because they are eitherexperiencing a lot of physical
aggression in the household,either towards others or the
young adults expressing ittowards themselves. They're
going to be homeless. They mightbe a victim of abuse or neglect,
(10:43):
or they're living with acaregiver who's not able to
provide the care to them becauseof impaired health. So I've gone
down the path with a fewfamilies about behaviors and the
increase in behaviors from theiryoung adult and you know,
puberty hits, and usually doesspike with many so...it's just
(11:05):
important to be very honest andopen about what you are
experiencing at home, so thatthey know that the there really
is a need for it.
Patrick Cadigan (11:16):
So that would be crisis resolution. And then
how is that different fromcrisis prevention.
Meghan Smallwood (11:22):
So crisis prevention is that within a
year, they notice that servicesmay be needed, and it could be
that they are at risk formeeting crisis resolution within
the year, or even if they have acaregiver who is 65 years or
older, and they recognize thatit's getting harder for them to
care for them. So it's justthey're recognizing that the
(11:42):
need may be there. But ofcourse, DDA is going to see if
there's any other resources orany other providers that can
help, you know, take care ofthem prior to using DDA funding
for anything.
Patrick Cadigan (11:56):
So it sounds...
Meghan Smallwood (11:57):
They will see if there's other, you know,
waivers, or other avenues to go.
Patrick Cadigan (12:02):
So crisis prevention is kind of looking at
things long term...
Meghan Smallwood (12:05):
Right.
Patrick Cadigan (12:05):
...whereas crisis resolution is the
immediate.
Current. Right.
Got it? Okay?
Meghan Smallwood (12:10):
Yep.
Patrick Cadigan (12:11):
And then so we have so that and that is all
under the umbrella of the familySupports Waiver. Now, if I
remember correctly, I rememberwe it had come up for Low
Intensity Support Services orLISS and what is lift funding,
list funding? And what is that?
So that is funding that is giventhrough a lottery process. It's
(12:33):
a random selection, and it'sprovided two times a year in the
fall and the spring. Andunfortunately, if you if your
young adult is on the autismwaiver, they are not eligible
for this, but it does provide upto $2,000 each time to help any
eligible children or adults withdevelopmental or intellectual
(12:53):
disabilities to purchasedifferent services or items for
their needs. And DDA has alengthy list on their website
that gives examples of what thefunding could be used for. But
just to give you some examples,I know families who have used it
to pay for summer camps eachyear, any modifications that
might be neat might need to bemade to the home, an adapted
(13:14):
bike if you want to buy an iPadfor your young adult, or even if
you want to make a garden in thehome, if they have an interest
in horticulture, it is a greatpossibility to get that extra
money for some help.
So with LISS, you had mentionedthat this is a lottery, and I'm
(13:34):
pretty sure I know what thatmeans. But could you just give
me...could you tell me what thatmeans, just for anybody who's
not sure.
Meghan Smallwood (13:41):
It's a simple little application thing. It's
just like one page that yousubmit and your name is put in
there, or your child's name isput in there and you get a
letter in the mail to find outif you have been given or
granted the money. You do notneed to have a DDA application
on file either. This is kind ofseparate from that, so it's
something that can be accessedbefore 21 and it's even
(14:03):
something that can be accessedafter 21.
Patrick Cadigan (14:06):
All right, so we have the so we've talked
about the family SupportsWaiver, Low Intensity Support
Services. Is there anythingelse?
Meghan Smallwood (14:14):
So if you if your young adult is applicable
for medical assistance, thereare waivers available through
there, such as Community FirstChoice that can help with some
of those personal supports needsin the home and if you are not
eligible, or if your young adultis not eligible for medical
assistance yet when they turn18. And I know we've kind of
(14:36):
talked about the timeline withreceiving SSI and then
automatically being eligible forMedicaid or medical assistance,
then they would be eligible forthis. So Community First Choice
is a waiver through Medicaidthat could provide some personal
care, personal supports, andusually they're not the staff
(14:56):
you'd be given hours, eachnumber, each individual. Gets a
certain number, and it is nottypically, you know, won't be
taking them in the community.
It's more to help in the homewith the grooming and hygiene,
just to give the caregiver alittle break. Community First
Choice is a nice option to tokind of fit around your DDA
funding after 21 so forinstance, you know, and we'll
(15:19):
get a little more into it. Butwith DDA, it is about a
meaningful day, so meaningfulday that could look like
different things for differentpeople, but let's say you have a
day program as your meaningfulday, but mom or dad go to work
in the morning, or they're stillat work in the afternoon when
the day is over for the youngadult, that Community First
Choice could be used on eitherend in order to provide some
(15:40):
assistance, you know, gettingthem ready to go, or getting
them off the van and stayingwith them in the house until
they get home.
Patrick Cadigan (15:49):
Got it.
Meghan Smallwood (15:49):
So it's just a matter of working the funding,
Patrick Cadigan (15:53):
Taking the next step, then. When one of the
common acronyms that we alwaysrun into is the CCS or the
Coordinator of CommunityService. So what is the, what
would be a definition ofCoordinator of Community
Service?
Meghan Smallwood (16:08):
Yeah and that'll kind of be bring me back
up, because I don't think Ifinished going through the whole
process after you have thatassessment, that comprehensive
assessment, but the the CCS isthe Coordinator of Community
Service, and they are kind ofyour middle man to DDA might.
They might be your lifeline attimes as you approach 21 but
they will be an, I thinkcoordinator is the key word.
(16:30):
They are your coordinator forthese DDA services after you
finish that comprehensiveassessment, and you need to be
on the lookout for a letter fromDDA again, if you don't receive
anything in a timely manner,then try and reach out either to
your transition specialist orthe eligibility specialist up at
DDA, just to follow up, theywill send that generic packet
(16:51):
that everyone gets. And the keything to be on the lookout for
is what the they have deemed thestatus for your young adult at
that time. Within all that text,you'll see a little section that
might say, you know, DDA futureneeds no CCS assigned. So what
that is telling you is thatthey've determined that your
(17:13):
young adult will be eligible andwill need that funding at 21
after they leave the schoolsystem, and they're saying that
there's no funding now becausethey're not 21 and I think
that's the most confusing thingfor a lot of families, because I
will get a very, you know,anxious phone call or email
(17:33):
saying, well, they said there'sno funding. I said, Well, that's
true. They don't have fundingright now because they're not 21
but they're telling you yes,when he hits 21 they will be
ready for him. So DDA, futureneed it's a good thing. DD,
current request means that theyrecognize, typically, that your
child will be exiting withinthree years. So this usually is
(17:55):
the status for students who areages 18 to 21 and current
request would usually meanyou're assigned a coordinator or
CCS sometimes. And I don't knowwhy DDA does this, but I've had
students who were 14 or 15 andare at current request.
I...there's no rhyme or reasonto it, but hey, then you get a
(18:17):
coordinator assigned, whichisn't a bad thing. You won't get
much from them at that point,but you'll have a person who may
change again and again and againbefore they hit 21 but so DD
current requests basicallyrecognizes that they also will
receive those services at 21 butyou might have a coordinator now
(18:38):
and then. The last category issupports only. Now this one
could be for a few reasons.
Supports only basicallyrecognizes maybe there's a need,
but not have enough need, andthey're not going they're not
eligible to receive services at21 you're not going to have a
coordinator, and it used to be awaiting list, but they're just,
there's nothing for that groupnow supports only. I've had
(19:01):
families who have been giventhat status before just because,
when they submitted the DDAapplication, they didn't include
documentation with it. So DDAdidn't see the need or recognize
the fact that even though theyhave a disability, it might not
impact them long term, yet theyneeded that, you know, reports
or IEP to show that it does. Theother reason could be if there
(19:23):
was too old of documentationsent, they just need more
current assessments completedand sent to them. So I wouldn't
worry if you got a supports onlyand your child is still younger,
usually by 18, if they are stillsupports only, I definitely
suggest sending them updatedassessments. And if you don't
have those from school yet, tryand find out where that re
(19:45):
evaluation is happening so itcan align and you can get those
updated assessments. It'spossible to upgrade the status
from that so back to thatcoordinator, the coordinator of
Community Services, CCS,usually. When you are told that
you're going to be assigned one,you get another generic letter
from DDA and says you need topick an agency. Otherwise, we're
(20:06):
going to pick one for you. Andagain, parents don't know what
to do. I wish they didn't sendso many generic letters, because
it's just so impersonal. Butanyway, they will list the
different agencies you can pickfrom, and you're the parent is
just supposed to select one. AndI always get the question, well,
how do I know which one'sbetter? What do you suggest? Who
should I go with? And honestly,you can look at the websites,
(20:28):
you can gather information abouteach one, but your best resource
would be talking to otherparents and who have a
coordinator, and ask them theiropinion, and go on those
Facebook groups for parents, or,you know, if there's a group
douse the county or your school,just gather some information
from others who are goingthrough it. That's going to be
(20:49):
your best bet. And I can tellyou, amongst all of them, since
the pandemic, there has justbeen a huge turnover, and it's
unfortunate, but I can't say onehas it better than the other,
but it really comes down to thecoordinator that you're
assigned, not so much theagency, because you might have a
really good coordinator with anagency that others are like,
(21:10):
meh, and you always have theoption to change coordinators
and agencies, and it's not anoverly long process. I've had
parents in their exiting yearswitch agencies, and it was only
a two week turnaround, and theywere matched up with a new one.
But just so you know, for ourcounty, we have or five now,
nope, six now, sorry, they justadded a new one, and that would
(21:32):
be Service Coordination, MMARS,or Medical Management and
Rehabilitation Services, theCoordinating Center, Optimal
Health Care, Total Care, and thenewest one is Beatrice Loving
Heart.
Patrick Cadigan (21:49):
But again, it sounds like the best thing to do
is to talk to other parentslike...
Meghan Smallwood (21:53):
Absolutely.
Patrick Cadigan (21:54):
...and use their experiences.
Meghan Smallwood (21:55):
And I will say too, there can also be
confusion. These are not theagencies who are going to
provide the actual servicesthrough DDA. These are the
agencies that the coordinator,who you you will pick, or the
agency that you will pick, thecoordinator will be assigned to
you to help you navigate the DDAproviders and timeline and
(22:16):
paperwork.
Patrick Cadigan (22:19):
Let's talk about, okay, so the the young
adult has hit 21. What happens,what happens at 21?
Meghan Smallwood (22:31):
So, and I don't think I mentioned this in
our last one, but thecoordinator, or CCS that's
assigned to your young adult asthey're approaching 21 you
should be hearing from them morefrequently, as opposed to the
one year check in, Hey. How youdoing? You still there? They
should be contacting you everyfew months. And again, there's
(22:51):
not much to be said or done, butat least acknowledging that they
recognize that your child isturning 21 soon, and then prior
to that last year, they shouldbe explaining the process a
little bit more and encouragingyou to visit day programs, if
that's the pathway you're goingto take. So that last school
(23:13):
year is the big year whereyou're really going to want your
transition specialist to helpwith things from the school
side. They are going to be a keyplayer in this, along with your
CCS. You really all will beworking together as a team. You
are going to want to explore dayprograms in the area, if that's
(23:34):
like I said, the pathway you'regoing or at least get
information on what's available,and consider, if you're going
that traditional route, thereare not as many in Howard County
as we would like to have.
However, the ones that have beenhere have been here for many
years, so they have goodreputations. And again, like
(23:55):
we've talked about before, it'sreally helpful to talk to other
parents who may already have ayoung adult at some of these
places and get their opinions.
Keep in mind, though, everyyoung adult is different. So
what doesn't work for Johnny maywork for Susan and vice versa.
I've had two parents walk intothe same program and walk out
(24:17):
with completely differentthoughts about it. But you know,
overall, just to find out whatthe process or what the day may
look like at a day program, ithelps to recognize, start
recognizing, what thedifferences may be between the
school day and a day programday.
Patrick Cadigan (24:32):
One question that I have, and this is a
little bit of a segue, but Iwanted to kind of throw it out
there. Can we talk about thedifference between entitlement
versus eligibility, because Iknow that there is a significant
difference.
Meghan Smallwood (24:47):
Yeah, that's a big one too, and really needs to
be recognized as you're lookingat these programs. So while your
student or young adult is in theschool system, they are entitled
to services. They are covered.
And buy that, and you know theyhave the IEP and all the
supports. Once they leave, theyare now eligible for services,
which means you may have yourtop choice for a day program
(25:09):
where you want them to go, butthey may be denied, or they may
not be accepted because theydon't feel like they can meet
their needs, or they don't havethe staffing for them, or they
don't have the necessaryaccommodation. So you really
have to be on top of it andaware that it's not an automatic
(25:30):
transfer over to a new place.
They need to be found eligibleand be accepted. I talked a
little bit about the traditionalroute, and I know on our
website, we have links for manyof the different day programs...
Patrick Cadigan (25:47):
There will be a link, there will be a link to
the show notes in that too,because we have, we have two
separate pages, right? We havethe traditional route, which is
going to include the agencies,but then we also have a
relatively new page on selfdirected.
Meghan Smallwood (26:02):
Right. So if you opt, if you find the
traditional nutritional root ofa day program may not be the
best fit for your young adult.
Self direction is anotherpathway from DDA, which you can
explore. And since the pandemic,I feel like more and more
parents are opting for this justbecause of the individualization
of it and the flexibility. Soit's definitely a good thing to
(26:22):
explore and just weigh bothoptions. We have a plethora of
information on that on ourwebsite, and it's definitely a
topic if you are interested into talk to your CCS about to
find out what their knowledgebase is on it. All CCS are
trained with it, but some may bemore familiar on it than others.
(26:47):
So it's just good to have thatconversation. If it's something
you're seriously considering.
Definitely be exploring allthose at the beginning of the
school year of that last exitingyear. By your see your and I
should say your CCS. CCS will bechecking in with you, making
sure you're exploring thetransition. Specialist can help
(27:11):
you set up tours, give youcontact information, help
arrange any meetings with someof the agencies, the day
programs. Go out and visit theprogram, talk to the directors,
see if you're able to take atour of the facility and just
get a feel for it and see youknow if you think it would be a
good option for your youngadult, or if you're doing self
(27:33):
directed start brainstorming.
What is it that they reallylike? What would be a meaningful
day for them? Would they bevolunteering? Would they be
employed? Would they just wantto be out in the community and
start thinking about anyconnections you might have or
could make to help plan a dayfor them? So that will all be
happening in the fall, and withyour CCS and your transition
specialist health and you'rereally going to want to have it
(27:56):
narrowed down before the winterbreak, usually December time of
what agencies are your topchoice, or day programs or your
top choice, or if it is selfdirected that you definitely are
going to pursue, yourcoordinator will be asking the
transition specialist andyourself to start gathering up
those necessary documentations.
(28:17):
And again, like we mentionedwith the initial application for
DDA, they really want to seethose records that explain the
severity of the disability andthe need for support and how
much need for support will bethere when they exit. All that
information is going to go intoa matrix score, which is a
(28:38):
number that your that DDA willbe giving you your young adult
to explain what how much supportthey need afterwards. So that
matrix score is really twoscores, and it is based off of
the health and safety andsupervision that your young
adult requires. And again, thatdocumentation is really going to
(28:58):
drive it. The paperwork for thatis submitted from DDA to a third
party, and then they give thenumber. Someone goes through all
the records, and they determinea number for your young adult.
Five is the biggest or thehighest number you can get, and
five is like the maximum amountof support needed, which can
(29:19):
often drive if you're going fora day program, a one on one,
support one is the lowest, whichmeans that they're pretty much
independent, and support is notas as needed for them, I would
say typically we see like a two,three, maybe a four, if you feel
like that, the number reallyisn't a good match, though, you
can always appeal it and talk toyour coordinator about it, but
(29:40):
that's the number really willdrive the need for support. And
so the coordinator will besubmitting all that you know,
you're just going to check inwith them to make sure they have
what they need, and they willlet you know when the number's
been determined. So once thematrix score is determined, that
is part of what will besubmitted for. DDA towards the
(30:02):
exact waiver that your youngadult is going to be put into.
There's three different waivers.
And I know we talked about onelast time when we were
discussing initial DDAinformation. But the family
supports waivers. The waiver forchildren birth, 21 and that's
specifically for differentsupport services. The two other
waivers that are you the onesafter 21 is the Community
(30:25):
Pathways waiver and theCommunity Supports Waiver. So
the Community Pathways waiverreally encompasses a meaningful
day support and residentialservices. Okay, that's the big
difference. So CommunityPathways includes residential
community support waiverincludes meaningful day and
(30:48):
support services. Okay? So Iknow parents get very nervous
about which waiver, which waivershould they go to? Which waiver
Do you think they need to be in?
Ultimately, DDA makes thatdecision based off of the needs
of the young adult at thatcurrent time. So you really
(31:10):
don't need to worry about whichwaiver they're going to be
placed in. Regardless of whetherit's community pathways or
community supports, they willhave funding for a meaningful
day. And that is what DDA isconcerned about. After they
leave a 21 they want everyone tohave meaningful day. Residential
really comes into play if, forexample, the young adult is
(31:32):
already in a residential and itneeds to continue after 21 or,
like we said, Before, there isreally a crisis or a need at
home that they need to be out ofthe house. I mean, you can, you
know, you can always put it outthere if you really want your
young adult to live, you know,on their own at some point. It's
a great long term goal, and it'sone that I think everyone should
(31:55):
at least consider. But at 21 thefirst step is really that
meaningful day. So you are nottied to one waiver for the rest
of their life. You can always itcan always be switched if
residential does become intoplay, but it's really the
waiver, and which waiver isreally not a huge concerning
(32:16):
factor.
Patrick Cadigan (32:18):
I think one of the things that I find really
interesting about what you saidin terms of the residential is,
is that I remember one of theconversations that we had with a
parent who was totallycomfortable with not having
their child like, leave thehouse, right, like they were
that was not a conversation thatthey were willing to have. So I
mean, like you said, it reallyjust depends on...
Meghan Smallwood (32:39):
Yeah.
Patrick Cadigan (32:39):
...what families are interested in.
Meghan Smallwood (32:40):
And more often than not, I find a lot of the
families say, Oh no, no, theythey don't need to move out,
like at 21 and that's, that's,that's fine, you know? I mean,
how many kids went to collegeand came home and lived there
until they got their feet wet inthe real world and settled but
it is something to consider, andI didn't, we can definitely talk
about the different options downthe road, but, like, it doesn't
(33:01):
have to be a group home, becauseI also think there's that, like,
stereotype of, oh, they're goingto be stuck in a group home
with, you know, six or sevenother people. But there's other
not and then there's nothingwrong with that. My sister lives
in a group home. It's a greatoption for her, but there's
other other ways of doing ittoo, like, supported living. Or,
my the other name is escapingright now, but like it's, it's
(33:24):
definitely something to researchdown the road, you know, and
never say, Never once did theand this all does fall in a
timeline for DDA. And I know alot of times DDA might be backed
up on their timeline, or thecoordinators often just waiting
for the the okay from DDA tosubmit things. So it can be a
(33:45):
waiting game. And a lot of timesthe winter into spring is and I
know it can be kind of anxietyridden from families, when you
just want to make sure thingsthat are progressing and you're
kind of at a standpoint. Butwhen DDA gives the Okay, they
can apply, and they will findout, you know, your waiver, and
that's when they really canstart talking about the person
(34:06):
centered planning. And that iskind of like, in a sense, the
IEP moving forward, because thatwill be where all the supports
are listed. Goals for your youngadult are listed. It's kind of
driving things from there onout, and it's something that's
revisited every year to makesure it's still relevant and
(34:27):
updated. But the person centeredplan will really encompass the
young adult, the family, thecoordinator. And if you decide
to go with a day program, theywould be involved. Or if you go
self directed, that would reallydrive the what the services from
your budget will be used formoving forward.
Patrick Cadigan (34:46):
I remember the person centered planning that
came up during one of the parentpanels that we had attended
recently, and there was quite abit of discussion around that.
Meghan Smallwood (34:56):
Yeah, and it's really important to start
thinking about that. Know, evenbefore that exit year, you know,
think about that person centeredplan and have, and I know one of
our parents had talked abouthaving, like, an extended
meeting with not only theschool, but inviting people who
know their their young adult,and getting their input, and
just putting together the wholepicture of your young adult and
(35:18):
what would make him or her happyto live a good life, and that's
what it's all about. You know,everyone's got it's so
individualized as to what a goodlife or meaningful day is for
each person. And we really wantthat person centered plan to
show that. So it's definitelygood to plan ahead. And then
(35:39):
once things are started inmotion from DDA, and you have
identified, if you're going witha day program, you've identified
the day program you'reinterested in. You know the
coordinator really will beworking with the admissions
counselor for the program tomake sure it they they will be
accepting them. Some of the dayprograms do a trial. They want
(36:00):
to have the young adult come outfor a couple days to see if it's
a good fit. They want to govisit them at school to get to
know them a little bit, talk tothe teacher or other service
providers, just to make sure itwould be a good place for them.
And it also comes down tostaffing. At this point, I know
a lot of them are still kind ofputting individuals on a waiting
(36:21):
list because staffing has beensuch an issue. So I'm hoping
with time it will get better,that there are a lot of factors,
which is why it's good to havemore than one choice in mind for
after exit, and then ideallyafter July 1 is when services
could start from DDA and again,it all comes down to the
(36:46):
process, and if things weresubmitted in a timely manner,
and everything's in order, andthe agency or day program that
you've selected is ready to go,I will say, notoriously in the
past, self directed plans havetaken a little longer to start,
typically, not in July. I know alot that have been maybe end of
summer, even into the fall, justbecause there's so many
(37:08):
logistics that need to befigured out. And it can be a
little harder when you becauseultimately, self direct. And I
don't think I mentioned this,you were given the budget from
DDA, and it's basicallydeveloping the day for your
young adult. And you know whatthey're going to do, who's going
to work with them, hiring thestaff, finding the activities or
(37:31):
the volunteer opportunities. SoDDA just needs to, they want to
make sure that it all belongs inthe budget. So there's a lot of
back and forth and checking tomake sure things are okay.
(37:53):
As always, you'll find links tothe information from our
conversations in our show notes.
We would love for theinformation from this and all
our other discussions to reachas many families as possible,
and we need your help to dothat. You can find our
conversations at www, dot P,twotransition.com, like, follow,
share out the podcast. Ourconversations are posted to all
(38:14):
the major platforms, includingApple podcasts, Spotify,
YouTube, music, and that's justnaming a few. So please share
and share often.
Patrick Cadigan (38:25):
Please check out our YouTube channel. We've
done some of the legwork for youby curating videos of topics
that revolve around transition.
We have playlists forguardianship, alternatives to
guardianship ABLE accounts, andthere's more to come. So please
be sure to subscribe there aswell. And finally, check out our
website, which is full ofinformation and links to
resources around the transitionprocess. Open your web browser
(38:46):
of choice and surf towww.postsecondarytransition.com
we thank you so much for thetime that you've spent with us,
and look forward to talkingagain soon.
It just seems Meghan, like we keep coming
back, we keep hitting the recordbutton, and we keep talking. So
I guess that's where we are.
Meghan Smallwood (00:08):
It feels like we were just here.
Patrick Cadigan (00:11):
Yeah, Gee. I wonder where that came from.
Hello. I am Patrick Cadigan. Iam a public school special
education teacher. Who is my cohost?
Meghan Smallwood (00:19):
I am Meghan Smallwood, and I'm a public
school transition coordinator,and we are here for Post
Secondary Transition. Over thelast few conversations, we
talked about how we decided wewere going to do some 101 style
conversations to essentiallyintroduce parents to the world
of secondary transition, and,more specifically, Post
Secondary Transition. So we'recontinuing our way up that
(00:42):
ladder, and now we're going tocover the big one; DDA.
Patrick Cadigan (00:46):
Yeah, the big one,
Meghan Smallwood (00:48):
The big one.
Patrick Cadigan (00:49):
Why don't we start with what is DDA?
Meghan Smallwood (00:52):
Yeah. So DDA is basically that primary state
agency that funds life after 21that long term funding not to
say there aren't differentavenues prior to 21 but the big
concern I think most of us haveat this point is after 21 and
(01:13):
that could include, like, ameaningful day, whether it's
employment, volunteering orcommunity exploration, It's very
individualized whatever is thebest fit for your young adult.
It could also includeresidential and personal
supports, but we will definitelyget more into that those details
as we go along. All right, so,and I know that this has come up
(01:36):
more than once, but it's alwaysgood to do you know, ask some of
the same questions again andagain, just as a reminder for
parents to hear know what'scoming up. When should a DDA
application first be completed?
So we advise to be completed atage 14, which is when those
transition pages first beginappearing on the IEP in our
(01:57):
county. But you can complete iteven before then. And I know
many parents who have used otherresources or providers you know,
especially when a child is firstdiagnosed, especially with
autism, many of the people thatthey come into their lives to
help them will suggestcompleting a DDA application.
(02:18):
Just get it off your plate andtaken care of. So there's no
harm in doing it prior, butdefinitely by 14, and the
application can be found on DDAwebsite. Or if you were in high
school, you can ask yourtransition specialist for a
copy. And even if you're not inhigh school, if your young adult
is in middle school, you canstill ask the case manager, and
(02:41):
they can always get in touchwith coordinating Transition
Specialists for the high schoolsin the area.
Some details in completing theapplication, you need to make
sure to include certaindocumentation with that
application. The applicationdoes not take long. It's just
couple pages, basically askingstraight forward information,
(03:02):
what the disability is, how muchhelp they need, what other
agencies you may have beenreceiving help from already, but
the advice straight from DDA hasbeen to send those applications
and documentationelectronically. Man, if I
remember correctly, that wassomething that you had
recommended out before, simplybecause some of those
(03:25):
applications, they can get lost,right? Yes, absolutely. And that
happened a lot during thepandemic. I had families who
completed it, mailed in hardcopies, and once you know, life
somewhat resumed to normaloperations. DDA did not have any
record of it, so it was likestarting over. So definitely
send it electronically with thatdocumentation, like I mentioned.
(03:48):
And when I say documentation,I'm talking psychological
assessments, any medical recordsthat really explain the severity
of a disability, the IEP, abehavior plan, educational
assessment, and if you have anyquestions, or if you need
copies, you can definitely askyour transition specialist for
(04:09):
help with that, but definitelysend that along with the
application. Well, and I knowthat it's come up before. One of
the things that I feel like wasmentioned when we discussed
timelines was that, like withthe evaluations, that while
you're collecting it, whileyou're making this binder, this,
this home folder, thatdocumentation should be within
three years, and I remember itspecifically in terms of, like,
(04:31):
psychological but it does thatalso apply to like the like, the
healthcare information as well.
Yeah, absolutely. And I thinkwhen they actually do the
assessment or talk a littlemore. And I know with other
different resources too, likeI'm thinking SSI, they want to
know within the last three yearsof any hospitalizations, major
surgeries, things like that,just to document how recent any
(04:52):
medical concerns have been. So Iwill say. And if we don't have
it already, maybe we can includethe email address for the
central region as to where tosend the applications for DDA.
Patrick Cadigan (05:10):
I am not 100% sure that that is on the site.
By the time we're done with thisconversation, it will be. And
the other thing is, if Iremember correctly, because I
know that sometimes navigatingthe DDA site itself can be a
little daunting. We also have acopy of the application on our
what is DDA page, so you canjust travel there, and it's very
(05:34):
straightforward. There's not alot of stuff there. So, and then
as far as the email address,yeah, I'm gonna throw that in
there, too.
Meghan Smallwood (05:42):
Awesome. And that is specifically for our
central region, which our countyis included. If you need to know
of other counties and whatregion they fall into, that can
be found on the actually, on theapp, the application, the last
page of the DDA application. AndI will say we also have the DDA
application, or DDA has it inSpanish as well. I think that
that's that is up on our side aswell. So good stuff. We are so
(06:05):
helpful. Look at that. Look atus saving the world one document
at a time. So after you completethat application and send it
along, I advise parents to writethe date on the top of your
application or on a sticky alongwith what documentation you sent
with the application, just tohave it on hand, because I know
(06:28):
previously, I've had parentssend it, and I would put a copy
in the transition file atschool, and we would not hear
anything from DDA, and I wouldgo and check with the
eligibility specialist, whowould say, we don't have any
application on file for thatstudent. And I remember one
scenario where I was actuallyable to go back and see, oh no,
(06:48):
this application for you know,John Smith was sent on March 12
with this documentation, and loand behold, an email came back.
Oh yes, we've found thatapplication.
As we all know, it's not aperfect system. Keep records and
don't be afraid to be thesqueaky wheel. Since the
pandemic, I think we thetransition specialist parents.
(07:10):
We've all seen that needs tohappen, and you need to be your
biggest, the biggest advocatefor your child. And then so once
the application has beensubmitted, what's the next step
in the process? Like, how? Like,essentially, how would What's
the guarantee that the familieswould find out that their that
their application was received?
So once the application's beensubmitted, usually within a
(07:30):
couple weeks, you should get aletter, typically a letter from
DDA. So just be mindful of yourmail, because a lot of times the
DDA will come back and say, Ohno, we sent a letter we never
heard from the family. And Ishould say, Be Found mindful of
that timeline, because DDA saidwe sent it and parents haven't
(07:51):
gotten and I find that kind ofodd. You can always ask your
transition specialist to help,help reach out, figure out who
to go to if they haven't heardanything. Is that letter or the
packet that they receive?
Patrick Cadigan (08:06):
Is that specific to the families, or is
that something that is it likegives you general information?
Meghan Smallwood (08:12):
I am glad you said that, because it is a very
generic letter. Whether it is toset up, I'm ahead of myself, the
generic letter will be sentafter they make a determination,
and that can be very confusing,but ahead of that, you will get
a letter saying that they wantto complete a comprehensive
assessment with you and youryoung adult, and that is when
(08:34):
you will actually have acoordinator come to your house,
and it's a random coordinatorjust assigned to the case, and
they have to meet your youngadult and meet with you, and
just make sure everything thatthey read about them on paper
fits what they are seeing andhearing, and just to clarify how
much need really is necessaryfor this young adult,
(08:55):
especially, you know, as theyget older, and I know thinking
about, like the IEP process, welike to come forward and, you
know, review all of thestrengths and progress that our
child has made during the yearwith DDA. It's the opposite. You
really want to think about yourchild on one of their hardest
days and let them know just howmuch help they would need to get
(09:16):
by and how much help you wouldneed to get by. They need to
know the most amount of supportthat would help this person have
a meaningful life after 21.
Patrick Cadigan (09:26):
And I know that this has come up before the DDA
is typically funding for after21. My thoughts go to, is there
anything that will help parentslike right now?
Meghan Smallwood (09:37):
Yeah, so, and I've encountered this a lot,
especially since the pandemic.
You know, it's been hard on alot of families, and help is
needed. It's all great to fillout an application for DDA, but
then to hear that it's notreally until after 21 it's kind
of disheartening. So like I saidbefore, there are circumstances
prior to 21 that funding couldbe available, and from DDA side.
There is the family supportswaiver, which could be for
(10:01):
children and the families, butit requires certain statuses,
which would be either crisisresolution or crisis prevention.
Patrick Cadigan (10:12):
Oh, that...
Meghan Smallwood (10:13):
Yes.
Patrick Cadigan (10:14):
...that sounds pretty okay. So what is, how
would you define crisisresolution?
Meghan Smallwood (10:19):
So DDA's eyes crisis resolution is when there
is a significant crisis presentand services are needed right
away, because they are eitherexperiencing a lot of physical
aggression in the household,either towards others or the
young adults expressing ittowards themselves. They're
going to be homeless. They mightbe a victim of abuse or neglect,
(10:43):
or they're living with acaregiver who's not able to
provide the care to them becauseof impaired health. So I've gone
down the path with a fewfamilies about behaviors and the
increase in behaviors from theiryoung adult and you know,
puberty hits, and usually doesspike with many so...it's just
(11:05):
important to be very honest andopen about what you are
experiencing at home, so thatthey know that the there really
is a need for it.
Patrick Cadigan (11:16):
So that would be crisis resolution. And then
how is that different fromcrisis prevention.
Meghan Smallwood (11:22):
So crisis prevention is that within a
year, they notice that servicesmay be needed, and it could be
that they are at risk formeeting crisis resolution within
the year, or even if they have acaregiver who is 65 years or
older, and they recognize thatit's getting harder for them to
care for them. So it's justthey're recognizing that the
(11:42):
need may be there. But ofcourse, DDA is going to see if
there's any other resources orany other providers that can
help, you know, take care ofthem prior to using DDA funding
for anything.
Patrick Cadigan (11:56):
So it sounds...
Meghan Smallwood (11:57):
They will see if there's other, you know,
waivers, or other avenues to go.
Patrick Cadigan (12:02):
So crisis prevention is kind of looking at
things long term...
Meghan Smallwood (12:05):
Right.
Patrick Cadigan (12:05):
...whereas crisis resolution is the
immediate.
Current. Right.
Got it? Okay?
Meghan Smallwood (12:10):
Yep.
Patrick Cadigan (12:11):
And then so we have so that and that is all
under the umbrella of the familySupports Waiver. Now, if I
remember correctly, I rememberwe it had come up for Low
Intensity Support Services orLISS and what is lift funding,
list funding? And what is that?
So that is funding that is giventhrough a lottery process. It's
(12:33):
a random selection, and it'sprovided two times a year in the
fall and the spring. Andunfortunately, if you if your
young adult is on the autismwaiver, they are not eligible
for this, but it does provide upto $2,000 each time to help any
eligible children or adults withdevelopmental or intellectual
(12:53):
disabilities to purchasedifferent services or items for
their needs. And DDA has alengthy list on their website
that gives examples of what thefunding could be used for. But
just to give you some examples,I know families who have used it
to pay for summer camps eachyear, any modifications that
might be neat might need to bemade to the home, an adapted
(13:14):
bike if you want to buy an iPadfor your young adult, or even if
you want to make a garden in thehome, if they have an interest
in horticulture, it is a greatpossibility to get that extra
money for some help.
So with LISS, you had mentionedthat this is a lottery, and I'm
(13:34):
pretty sure I know what thatmeans. But could you just give
me...could you tell me what thatmeans, just for anybody who's
not sure.
Meghan Smallwood (13:41):
It's a simple little application thing. It's
just like one page that yousubmit and your name is put in
there, or your child's name isput in there and you get a
letter in the mail to find outif you have been given or
granted the money. You do notneed to have a DDA application
on file either. This is kind ofseparate from that, so it's
something that can be accessedbefore 21 and it's even
(14:03):
something that can be accessedafter 21.
Patrick Cadigan (14:06):
All right, so we have the so we've talked
about the family SupportsWaiver, Low Intensity Support
Services. Is there anythingelse?
Meghan Smallwood (14:14):
So if you if your young adult is applicable
for medical assistance, thereare waivers available through
there, such as Community FirstChoice that can help with some
of those personal supports needsin the home and if you are not
eligible, or if your young adultis not eligible for medical
assistance yet when they turn18. And I know we've kind of
(14:36):
talked about the timeline withreceiving SSI and then
automatically being eligible forMedicaid or medical assistance,
then they would be eligible forthis. So Community First Choice
is a waiver through Medicaidthat could provide some personal
care, personal supports, andusually they're not the staff
(14:56):
you'd be given hours, eachnumber, each individual. Gets a
certain number, and it is nottypically, you know, won't be
taking them in the community.
It's more to help in the homewith the grooming and hygiene,
just to give the caregiver alittle break. Community First
Choice is a nice option to tokind of fit around your DDA
funding after 21 so forinstance, you know, and we'll
(15:19):
get a little more into it. Butwith DDA, it is about a
meaningful day, so meaningfulday that could look like
different things for differentpeople, but let's say you have a
day program as your meaningfulday, but mom or dad go to work
in the morning, or they're stillat work in the afternoon when
the day is over for the youngadult, that Community First
Choice could be used on eitherend in order to provide some
(15:40):
assistance, you know, gettingthem ready to go, or getting
them off the van and stayingwith them in the house until
they get home.
Patrick Cadigan (15:49):
Got it.
Meghan Smallwood (15:49):
So it's just a matter of working the funding,
Patrick Cadigan (15:53):
Taking the next step, then. When one of the
common acronyms that we alwaysrun into is the CCS or the
Coordinator of CommunityService. So what is the, what
would be a definition ofCoordinator of Community
Service?
Meghan Smallwood (16:08):
Yeah and that'll kind of be bring me back
up, because I don't think Ifinished going through the whole
process after you have thatassessment, that comprehensive
assessment, but the the CCS isthe Coordinator of Community
Service, and they are kind ofyour middle man to DDA might.
They might be your lifeline attimes as you approach 21 but
they will be an, I thinkcoordinator is the key word.
(16:30):
They are your coordinator forthese DDA services after you
finish that comprehensiveassessment, and you need to be
on the lookout for a letter fromDDA again, if you don't receive
anything in a timely manner,then try and reach out either to
your transition specialist orthe eligibility specialist up at
DDA, just to follow up, theywill send that generic packet
(16:51):
that everyone gets. And the keything to be on the lookout for
is what the they have deemed thestatus for your young adult at
that time. Within all that text,you'll see a little section that
might say, you know, DDA futureneeds no CCS assigned. So what
that is telling you is thatthey've determined that your
(17:13):
young adult will be eligible andwill need that funding at 21
after they leave the schoolsystem, and they're saying that
there's no funding now becausethey're not 21 and I think
that's the most confusing thingfor a lot of families, because I
will get a very, you know,anxious phone call or email
(17:33):
saying, well, they said there'sno funding. I said, Well, that's
true. They don't have fundingright now because they're not 21
but they're telling you yes,when he hits 21 they will be
ready for him. So DDA, futureneed it's a good thing. DD,
current request means that theyrecognize, typically, that your
child will be exiting withinthree years. So this usually is
(17:55):
the status for students who areages 18 to 21 and current
request would usually meanyou're assigned a coordinator or
CCS sometimes. And I don't knowwhy DDA does this, but I've had
students who were 14 or 15 andare at current request.
I...there's no rhyme or reasonto it, but hey, then you get a
(18:17):
coordinator assigned, whichisn't a bad thing. You won't get
much from them at that point,but you'll have a person who may
change again and again and againbefore they hit 21 but so DD
current requests basicallyrecognizes that they also will
receive those services at 21 butyou might have a coordinator now
(18:38):
and then. The last category issupports only. Now this one
could be for a few reasons.
Supports only basicallyrecognizes maybe there's a need,
but not have enough need, andthey're not going they're not
eligible to receive services at21 you're not going to have a
coordinator, and it used to be awaiting list, but they're just,
there's nothing for that groupnow supports only. I've had
(19:01):
families who have been giventhat status before just because,
when they submitted the DDAapplication, they didn't include
documentation with it. So DDAdidn't see the need or recognize
the fact that even though theyhave a disability, it might not
impact them long term, yet theyneeded that, you know, reports
or IEP to show that it does. Theother reason could be if there
(19:23):
was too old of documentationsent, they just need more
current assessments completedand sent to them. So I wouldn't
worry if you got a supports onlyand your child is still younger,
usually by 18, if they are stillsupports only, I definitely
suggest sending them updatedassessments. And if you don't
have those from school yet, tryand find out where that re
(19:45):
evaluation is happening so itcan align and you can get those
updated assessments. It'spossible to upgrade the status
from that so back to thatcoordinator, the coordinator of
Community Services, CCS,usually. When you are told that
you're going to be assigned one,you get another generic letter
from DDA and says you need topick an agency. Otherwise, we're
(20:06):
going to pick one for you. Andagain, parents don't know what
to do. I wish they didn't sendso many generic letters, because
it's just so impersonal. Butanyway, they will list the
different agencies you can pickfrom, and you're the parent is
just supposed to select one. AndI always get the question, well,
how do I know which one'sbetter? What do you suggest? Who
should I go with? And honestly,you can look at the websites,
(20:28):
you can gather information abouteach one, but your best resource
would be talking to otherparents and who have a
coordinator, and ask them theiropinion, and go on those
Facebook groups for parents, or,you know, if there's a group
douse the county or your school,just gather some information
from others who are goingthrough it. That's going to be
(20:49):
your best bet. And I can tellyou, amongst all of them, since
the pandemic, there has justbeen a huge turnover, and it's
unfortunate, but I can't say onehas it better than the other,
but it really comes down to thecoordinator that you're
assigned, not so much theagency, because you might have a
really good coordinator with anagency that others are like,
(21:10):
meh, and you always have theoption to change coordinators
and agencies, and it's not anoverly long process. I've had
parents in their exiting yearswitch agencies, and it was only
a two week turnaround, and theywere matched up with a new one.
But just so you know, for ourcounty, we have or five now,
nope, six now, sorry, they justadded a new one, and that would
(21:32):
be Service Coordination, MMARS,or Medical Management and
Rehabilitation Services, theCoordinating Center, Optimal
Health Care, Total Care, and thenewest one is Beatrice Loving
Heart.
Patrick Cadigan (21:49):
But again, it sounds like the best thing to do
is to talk to other parentslike...
Meghan Smallwood (21:53):
Absolutely.
Patrick Cadigan (21:54):
...and use their experiences.
Meghan Smallwood (21:55):
And I will say too, there can also be
confusion. These are not theagencies who are going to
provide the actual servicesthrough DDA. These are the
agencies that the coordinator,who you you will pick, or the
agency that you will pick, thecoordinator will be assigned to
you to help you navigate the DDAproviders and timeline and
(22:16):
paperwork.
Patrick Cadigan (22:19):
Let's talk about, okay, so the the young
adult has hit 21. What happens,what happens at 21?
Meghan Smallwood (22:31):
So, and I don't think I mentioned this in
our last one, but thecoordinator, or CCS that's
assigned to your young adult asthey're approaching 21 you
should be hearing from them morefrequently, as opposed to the
one year check in, Hey. How youdoing? You still there? They
should be contacting you everyfew months. And again, there's
(22:51):
not much to be said or done, butat least acknowledging that they
recognize that your child isturning 21 soon, and then prior
to that last year, they shouldbe explaining the process a
little bit more and encouragingyou to visit day programs, if
that's the pathway you're goingto take. So that last school
(23:13):
year is the big year whereyou're really going to want your
transition specialist to helpwith things from the school
side. They are going to be a keyplayer in this, along with your
CCS. You really all will beworking together as a team. You
are going to want to explore dayprograms in the area, if that's
(23:34):
like I said, the pathway you'regoing or at least get
information on what's available,and consider, if you're going
that traditional route, thereare not as many in Howard County
as we would like to have.
However, the ones that have beenhere have been here for many
years, so they have goodreputations. And again, like
(23:55):
we've talked about before, it'sreally helpful to talk to other
parents who may already have ayoung adult at some of these
places and get their opinions.
Keep in mind, though, everyyoung adult is different. So
what doesn't work for Johnny maywork for Susan and vice versa.
I've had two parents walk intothe same program and walk out
(24:17):
with completely differentthoughts about it. But you know,
overall, just to find out whatthe process or what the day may
look like at a day program, ithelps to recognize, start
recognizing, what thedifferences may be between the
school day and a day programday.
Patrick Cadigan (24:32):
One question that I have, and this is a
little bit of a segue, but Iwanted to kind of throw it out
there. Can we talk about thedifference between entitlement
versus eligibility, because Iknow that there is a significant
difference.
Meghan Smallwood (24:47):
Yeah, that's a big one too, and really needs to
be recognized as you're lookingat these programs. So while your
student or young adult is in theschool system, they are entitled
to services. They are covered.
And buy that, and you know theyhave the IEP and all the
supports. Once they leave, theyare now eligible for services,
which means you may have yourtop choice for a day program
(25:09):
where you want them to go, butthey may be denied, or they may
not be accepted because theydon't feel like they can meet
their needs, or they don't havethe staffing for them, or they
don't have the necessaryaccommodation. So you really
have to be on top of it andaware that it's not an automatic
(25:30):
transfer over to a new place.
They need to be found eligibleand be accepted. I talked a
little bit about the traditionalroute, and I know on our
website, we have links for manyof the different day programs...
Patrick Cadigan (25:47):
There will be a link, there will be a link to
the show notes in that too,because we have, we have two
separate pages, right? We havethe traditional route, which is
going to include the agencies,but then we also have a
relatively new page on selfdirected.
Meghan Smallwood (26:02):
Right. So if you opt, if you find the
traditional nutritional root ofa day program may not be the
best fit for your young adult.
Self direction is anotherpathway from DDA, which you can
explore. And since the pandemic,I feel like more and more
parents are opting for this justbecause of the individualization
of it and the flexibility. Soit's definitely a good thing to
(26:22):
explore and just weigh bothoptions. We have a plethora of
information on that on ourwebsite, and it's definitely a
topic if you are interested into talk to your CCS about to
find out what their knowledgebase is on it. All CCS are
trained with it, but some may bemore familiar on it than others.
(26:47):
So it's just good to have thatconversation. If it's something
you're seriously considering.
Definitely be exploring allthose at the beginning of the
school year of that last exitingyear. By your see your and I
should say your CCS. CCS will bechecking in with you, making
sure you're exploring thetransition. Specialist can help
(27:11):
you set up tours, give youcontact information, help
arrange any meetings with someof the agencies, the day
programs. Go out and visit theprogram, talk to the directors,
see if you're able to take atour of the facility and just
get a feel for it and see youknow if you think it would be a
good option for your youngadult, or if you're doing self
(27:33):
directed start brainstorming.
What is it that they reallylike? What would be a meaningful
day for them? Would they bevolunteering? Would they be
employed? Would they just wantto be out in the community and
start thinking about anyconnections you might have or
could make to help plan a dayfor them? So that will all be
happening in the fall, and withyour CCS and your transition
specialist health and you'rereally going to want to have it
(27:56):
narrowed down before the winterbreak, usually December time of
what agencies are your topchoice, or day programs or your
top choice, or if it is selfdirected that you definitely are
going to pursue, yourcoordinator will be asking the
transition specialist andyourself to start gathering up
those necessary documentations.
(28:17):
And again, like we mentionedwith the initial application for
DDA, they really want to seethose records that explain the
severity of the disability andthe need for support and how
much need for support will bethere when they exit. All that
information is going to go intoa matrix score, which is a
(28:38):
number that your that DDA willbe giving you your young adult
to explain what how much supportthey need afterwards. So that
matrix score is really twoscores, and it is based off of
the health and safety andsupervision that your young
adult requires. And again, thatdocumentation is really going to
(28:58):
drive it. The paperwork for thatis submitted from DDA to a third
party, and then they give thenumber. Someone goes through all
the records, and they determinea number for your young adult.
Five is the biggest or thehighest number you can get, and
five is like the maximum amountof support needed, which can
(29:19):
often drive if you're going fora day program, a one on one,
support one is the lowest, whichmeans that they're pretty much
independent, and support is notas as needed for them, I would
say typically we see like a two,three, maybe a four, if you feel
like that, the number reallyisn't a good match, though, you
can always appeal it and talk toyour coordinator about it, but
(29:40):
that's the number really willdrive the need for support. And
so the coordinator will besubmitting all that you know,
you're just going to check inwith them to make sure they have
what they need, and they willlet you know when the number's
been determined. So once thematrix score is determined, that
is part of what will besubmitted for. DDA towards the
(30:02):
exact waiver that your youngadult is going to be put into.
There's three different waivers.
And I know we talked about onelast time when we were
discussing initial DDAinformation. But the family
supports waivers. The waiver forchildren birth, 21 and that's
specifically for differentsupport services. The two other
waivers that are you the onesafter 21 is the Community
(30:25):
Pathways waiver and theCommunity Supports Waiver. So
the Community Pathways waiverreally encompasses a meaningful
day support and residentialservices. Okay, that's the big
difference. So CommunityPathways includes residential
community support waiverincludes meaningful day and
(30:48):
support services. Okay? So Iknow parents get very nervous
about which waiver, which waivershould they go to? Which waiver
Do you think they need to be in?
Ultimately, DDA makes thatdecision based off of the needs
of the young adult at thatcurrent time. So you really
(31:10):
don't need to worry about whichwaiver they're going to be
placed in. Regardless of whetherit's community pathways or
community supports, they willhave funding for a meaningful
day. And that is what DDA isconcerned about. After they
leave a 21 they want everyone tohave meaningful day. Residential
really comes into play if, forexample, the young adult is
(31:32):
already in a residential and itneeds to continue after 21 or,
like we said, Before, there isreally a crisis or a need at
home that they need to be out ofthe house. I mean, you can, you
know, you can always put it outthere if you really want your
young adult to live, you know,on their own at some point. It's
a great long term goal, and it'sone that I think everyone should
(31:55):
at least consider. But at 21 thefirst step is really that
meaningful day. So you are nottied to one waiver for the rest
of their life. You can always itcan always be switched if
residential does become intoplay, but it's really the
waiver, and which waiver isreally not a huge concerning
(32:16):
factor.
Patrick Cadigan (32:18):
I think one of the things that I find really
interesting about what you saidin terms of the residential is,
is that I remember one of theconversations that we had with a
parent who was totallycomfortable with not having
their child like, leave thehouse, right, like they were
that was not a conversation thatthey were willing to have. So I
mean, like you said, it reallyjust depends on...
Meghan Smallwood (32:39):
Yeah.
Patrick Cadigan (32:39):
...what families are interested in.
Meghan Smallwood (32:40):
And more often than not, I find a lot of the
families say, Oh no, no, theythey don't need to move out,
like at 21 and that's, that's,that's fine, you know? I mean,
how many kids went to collegeand came home and lived there
until they got their feet wet inthe real world and settled but
it is something to consider, andI didn't, we can definitely talk
about the different options downthe road, but, like, it doesn't
(33:01):
have to be a group home, becauseI also think there's that, like,
stereotype of, oh, they're goingto be stuck in a group home
with, you know, six or sevenother people. But there's other
not and then there's nothingwrong with that. My sister lives
in a group home. It's a greatoption for her, but there's
other other ways of doing ittoo, like, supported living. Or,
my the other name is escapingright now, but like it's, it's
(33:24):
definitely something to researchdown the road, you know, and
never say, Never once did theand this all does fall in a
timeline for DDA. And I know alot of times DDA might be backed
up on their timeline, or thecoordinators often just waiting
for the the okay from DDA tosubmit things. So it can be a
(33:45):
waiting game. And a lot of timesthe winter into spring is and I
know it can be kind of anxietyridden from families, when you
just want to make sure thingsthat are progressing and you're
kind of at a standpoint. Butwhen DDA gives the Okay, they
can apply, and they will findout, you know, your waiver, and
that's when they really canstart talking about the person
(34:06):
centered planning. And that iskind of like, in a sense, the
IEP moving forward, because thatwill be where all the supports
are listed. Goals for your youngadult are listed. It's kind of
driving things from there onout, and it's something that's
revisited every year to makesure it's still relevant and
(34:27):
updated. But the person centeredplan will really encompass the
young adult, the family, thecoordinator. And if you decide
to go with a day program, theywould be involved. Or if you go
self directed, that would reallydrive the what the services from
your budget will be used formoving forward.
Patrick Cadigan (34:46):
I remember the person centered planning that
came up during one of the parentpanels that we had attended
recently, and there was quite abit of discussion around that.
Meghan Smallwood (34:56):
Yeah, and it's really important to start
thinking about that. Know, evenbefore that exit year, you know,
think about that person centeredplan and have, and I know one of
our parents had talked abouthaving, like, an extended
meeting with not only theschool, but inviting people who
know their their young adult,and getting their input, and
just putting together the wholepicture of your young adult and
(35:18):
what would make him or her happyto live a good life, and that's
what it's all about. You know,everyone's got it's so
individualized as to what a goodlife or meaningful day is for
each person. And we really wantthat person centered plan to
show that. So it's definitelygood to plan ahead. And then
(35:39):
once things are started inmotion from DDA, and you have
identified, if you're going witha day program, you've identified
the day program you'reinterested in. You know the
coordinator really will beworking with the admissions
counselor for the program tomake sure it they they will be
accepting them. Some of the dayprograms do a trial. They want
(36:00):
to have the young adult come outfor a couple days to see if it's
a good fit. They want to govisit them at school to get to
know them a little bit, talk tothe teacher or other service
providers, just to make sure itwould be a good place for them.
And it also comes down tostaffing. At this point, I know
a lot of them are still kind ofputting individuals on a waiting
(36:21):
list because staffing has beensuch an issue. So I'm hoping
with time it will get better,that there are a lot of factors,
which is why it's good to havemore than one choice in mind for
after exit, and then ideallyafter July 1 is when services
could start from DDA and again,it all comes down to the
(36:46):
process, and if things weresubmitted in a timely manner,
and everything's in order, andthe agency or day program that
you've selected is ready to go,I will say, notoriously in the
past, self directed plans havetaken a little longer to start,
typically, not in July. I know alot that have been maybe end of
summer, even into the fall, justbecause there's so many
(37:08):
logistics that need to befigured out. And it can be a
little harder when you becauseultimately, self direct. And I
don't think I mentioned this,you were given the budget from
DDA, and it's basicallydeveloping the day for your
young adult. And you know whatthey're going to do, who's going
to work with them, hiring thestaff, finding the activities or
(37:31):
the volunteer opportunities. SoDDA just needs to, they want to
make sure that it all belongs inthe budget. So there's a lot of
back and forth and checking tomake sure things are okay.
(37:53):
As always, you'll find links tothe information from our
conversations in our show notes.
We would love for theinformation from this and all
our other discussions to reachas many families as possible,
and we need your help to dothat. You can find our
conversations at www, dot P,twotransition.com, like, follow,
share out the podcast. Ourconversations are posted to all
(38:14):
the major platforms, includingApple podcasts, Spotify,
YouTube, music, and that's justnaming a few. So please share
and share often.
Patrick Cadigan (38:25):
Please check out our YouTube channel. We've
done some of the legwork for youby curating videos of topics
that revolve around transition.
We have playlists forguardianship, alternatives to
guardianship ABLE accounts, andthere's more to come. So please
be sure to subscribe there aswell. And finally, check out our
website, which is full ofinformation and links to
resources around the transitionprocess. Open your web browser
(38:46):
of choice and surf towww.postsecondarytransition.com
we thank you so much for thetime that you've spent with us,
and look forward to talkingagain soon.
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