MARYLAND RESPITE CARE
COALITION, INC.
“RESPITE: Create It!”
The 2010 National Lifespan
Respite Conference
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Hosted by The
Maryland Respite
Care Coalition, Inc.
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In Partnership
With the ARCH
National Respite
Network and
the National
Respite Coalition
Sheraton Baltimore City Center Hotel
101 West Fayette Street
Baltimore, Maryland 21201
Sunday, October 24, 2010Wednesday, October 27,2010
How Forms of and Respite
Care Needs Have Changed For
My Family During Our Lifetimes
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By Marie A. Sherrett
Daughter/Parent/MPA Student,
Strayer University
I’m a single parent of Mark, 30, w/autism+his
main caregiver since 1986.
My son, Daniel, 27, after Navy and working part
time at 701 Restaurant, graduated 10/09 at NY’s
Culinary Institute of America and is on the wait
staff @ SouWest Restaurant @ The Mandarin
Oriental Hotel, D.C. He’ll be a wine expert.
After me, he’d care for Mark per a 4/05 signed
General Power of Attorney.
Daniel says I’m a terrible
Mother! I can’t please
him. Yet, he voluntarily
edited 2 restaurant
training manuals and got
an award. So, I did
something right!
My Background
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I’m in a D.C. multinational law firm.
I got a B.S. in busi administration/
management concentration 6/08,
graduating with honors from Strayer.
I’m now earning an MPA there.
I also have 30 Ph.D.’s in guilt.
What I Hope You Learn
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Today I hope you get more insight and
knowledge on stages/kinds of respite
care; how it changes for caregivers or
those cared for and get food for thought:
Needs or degrees of respite care vary over
time, per disability and all involved.
I welcome all questions: I’m not shy.
My thought: Real respite care is free, not paid.
Variations On Elder Care
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Adults may care for elderly parents+
share care w/family or others.
3 of my sisters do.
1 sister’s husband is an only son of
his widowed Mother in a retirement
site.
A sister+her husband share care with
his family of his Mother in the site.
My Widowed Mother
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88, in the site, has many disabilities. My 5
sisters, 4 brothers-in-law+10 grandkids
see her. My bro sees her at Xmas.
She never drove, was deaf by 65 and won’t
sign. We write it all out. She has a TDD
(telecom-for-the-deaf) machine. At 80 per
me she was finally correctly ID’d with
mental illness. Imagine that…….
My Mother
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Mental illnesses may be in families of
those w/autism.
1 sister is our Mother’s main medical,
$ and caregiver advocate.
Our Mother is a bit independent but
hospitalized 3 times in 2009. She
gets help herself.
My Mother
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We shop for her; see her; clean her
apartment; care for her; organize her;
coordinate medical care; fill pill boxes;
ensure she gets/takes meds; get her to
doctors; do laundry; get hair cuts; write
her friends; see her neighbors and ask she
not pull the emergency cord to go by
ambulance to ERs.
We use a lot of gas.
1 other resident hoped we’d help her, too.
My Mother
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For 9 months I emailed/wrote to get
her off all catalog mail lists or told
charities to not send her $ requests.
USPS is grateful!
We may coordinate it all by cell as we
drive=Oprah Winfrey would not like
that.
1 doing it all would need respite care.
My Mother
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It creates stress as we work; save
leave; change jobs; raise kids; pay
bills; clean; shop; eat; make meals;
attend school or travel.
If so, our Mother regresses! Others
must go see her more, as in
hurricane season.
We monitor her mental health.
My Mother
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In 1970, my married, working, bususing Mother of 7+our Dad w/3 jobs,
cared for her Mother w/no respite
care. Her sister did not help.
Our Grandmother died @ 72 in a
nursing home.
My Mother
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As I get degrees, my ideas on care of
our Mother+ 2 sisters are heard by
sisters w/college degrees or who are
getting more degrees. Why is that?
A sister nixed a www.carepages.com
web page on our Mother due to
privacy issues.
Other Family Care Issues
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1 sister+her family have mental and
medical issues. We’ve helped them
since 2002, as w/a 2007 SSDI
Application (awarded!).
It takes a village: 1 can’t do it all.
Helping 1 sister=Respite care for her.
We may need to help another+her
family.
Other Family Care Issues
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In LV my ex w/mental and medical issues cared
for his Mother + 2 adult disabled brothers.
She raised 1 niece after Social Services came to
help her+my nephew w/autism. He’s in group
care. The parents died. My ExxonMobil niece
remarried and is in TX.
His Mother died 5/10 after 2 diabetes’ surgeries.
My ex’s disabled bro is in her home.
Mark’s SSA $ by his Father retiring=$1,508 in
back SSA+$504 monthly starting 8/4=Pay bills!
SSA was reimbursed $226 per its request!=Bill!
My ex takes meds for med/mental issues=VA.
Caregiver Health Problems
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Stress=Health issues for caregivers of
those w/disabilities or contributes to preexisting health problems.
Stress goes up if caregivers get no respite
care.
Respite care, a well-needed/well-earned break
and taxpayer right, rejuvenates caregivers.
No 1 person can do it all nor should they.
Mark Phillip Sherrett
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In 2009 a sister asked why Daniel is as he
is now w/Mark as his brother? Here’s why:
I used all respite care or breaks I could,
even if I paid and took it off my taxes.
Follow my $ outlays, WHICH WENT UP, UP,
UP!
Start of Child/Respite Care
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Working in FL after Mark’s birth ended after 2
months paying $200 for unlicensed family child
care.
Free child care ended once he crawled.
A FL teen got $50/month for 5 years as I typed
for court reporters or for breaks.
She+1 brother were w/2 grandparents.
I trained her, not knowing Mark had autism!
Typing ended after Daniel, so I couldn’t pay.
Stress from no respite care=I got sick.
Paid Aide=Future Professor
Husband #3 was in HS w/her.
 They’re VA professors who want no
kids!
--------------------------------------------- I never paid taxes on care providers I
hired! Oops!!!
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Child Versus Respite Care
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Paid child care is if parents work full time.
Good luck getting it for 1 w/autism.
Are they trained? There’s always
turnover!
Child care resource centers help. Those
trained on autism will always work.
Respite care is needed for those caring for
those w/disabilities.
It’s a break for caregivers.
Year 1/After Divorce Child Care
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Pawned 1 engagement ring for $ for 1
month site child care. (Who got Daniel
home from there?)
MD unlicensed family care providers were
untrained w/no ethics.
Details are scary=I was naïve.
The Father (no help then for his genetic
mental issues) saw them 3 times from
1986-1987 and then came up.
Year 1/After Divorce Child Care
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Child/respite care on 2 sons as I was
w/my Mother, 2 sisters and 1 brother
(who left later per me!):
Mark had free ESY.
I paid $200/month for family child
care providers.=Fired them.
I paid airlines $25/each for fees to
get them to FL or NV=Break? OT $!
Year 2/After Divorce
Child Care and Work Changes
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I change jobs for more $.
No free ESY for Mark again until 1993.
My Mother saw a teen ad for child care.
I call=She began.
I paid $270/month to a hospital child care site.
I paid 1 sister $10/week to get Daniel home or
teen walks him home.
The Father has a local job and does 1 overnight/
week=I get a break but no OT $.
Year 2/After Divorce
Child Care and Work Changes
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Child support increase petition=
problems=Phone harassment case.
I’m in FL 2 days for 1 hearing w/2
friends=Problem there!
Mark’s sp ed/early childhood center
teacher said “autism.”
I read on it, join ASA and make calls.
Year 3/After Divorce
Child Care and Work Changes
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After 1 year probation, the Father→LV to
be w/his Mother and work there.
Daniel tested for sp ed at 3; ID’d @ 9.
My sons don’t see the Father 3 years since
I can’t pay airfares.
CS issues 1988-2009=SSA ends it 8/10.
I paid for all visit airfares 1993-2001
CS=$200-$500/month at most.
10/88: I change jobs for more $.
Years 3-5/After Divorce
Child Care and Work Changes
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I paid $270/month to a local hospital center child
care site+I pay 1 staffer $50/month to take
Daniel home since all sisters gone.
He attends weekly free MD National Capital Park
and Planning Commission day camp
+I pay 1 teen $50/week to walk him home or for
Mark after he’s home by bus or they go by Metro
to me to eat
I paid 1 teen $20/on snow days for 2 sons
I paid 1 teen $50/week if school is closed
I paid $100/month to MDNCPPC for before care (I
take Daniel)+I paid 1 teen $50/week.
Years 3-5/After Divorce
Child Care and Work Changes
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A teen w/my Mother, who got $600/
month in room/board/food, calls if my
Mother has odd behaviors. We then eat
out.=$, again.
I took few breaks in Years 1-5.
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Um, dating…….???
Mark’s on Ritalin 1984-1992= I get Rx’s
by MD doctor after work w/2 sons w/me=
No break for me!
Years 3-5/After Divorce
Child Care and Work Changes
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I paid for Daniel’s MD soccer/t-ball class
w/pickup to/from by me or 1 teen=No
break there!
We see parks weekdays or weekends.
If I tired them out, I could sleep!
I paid for their movies once to be in mine
alone later.=My breaks.
I paid for Daniel’s weekend science classes
at Smithsonian as Mark and I are together.
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Notice I’m not in my Mother’s home weekends.
Years 3-5/After Divorce
Child Care and Work Changes
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I paid $100/each for 16 Saturday Children’s
Developmental Clinics at PGCC for 2 to go by bus
and 1:1 aides. I do library books for OT $. Then
only Mark goes=Daniel is w/me as I food shop.
No break/OT for me, yet I see parents.
I paid $100 for 2 camps w/families.
No break for me: We got lost!
I paid $100+ for 1 hotel stay w/free child care by
trained staff as I go to a conference=1/2 break
for me.
After Divorce Child
Care and Work Changes
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1988-1992 teachers/staff in PGPSfor
Mark are untrained on autism, but I
only knew it later.
I stay @ his school on leave.
No break there for naïve me.
10/91: I change jobs for more $.
Year 6: Daniel does basketball=$.
After Divorce Child
Care and Work Changes
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I paid $200+ for Mark for MNCPPC Camp
Champion in Summers: 1987-1991.
I paid 1 teen $50/week for 2 sons after
Mark came by bus.
I paid 1 teen $50/week for 2 sons if
schools/camps closed to walk them all
over to tire them out!
I paid $100 for Mark for 1 overnight trip
by MNCPPC Sp Pops Division.
Break for me for a bit=“Date” w/Daniel!
After Divorce Child
Care and Work Changes
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I met a Mother of 2 w/her Mother
thru a parent group. She did free
child care for my sons as I work if
school’s closed. She’s in FL. We met
if I’m there, but part: Her mental
issues=layoffs. Her unmarried girls
have 3 kids. Her relatives ignore her.
After Divorce Child
Care and Work Changes
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Mid-1991-Mid-1992: For 1 year my Mother’s
home=Pick-up/drop-off.
I pay 1 teen for after-care or on snow days.
I’m home if school is closed or get care givers.
6/91-8/01: I paid to send Daniel→LV on breaks.
10/92: I change jobs for more $.
1990’s: Mark attends Kids Enjoy Exercise Now
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Free
No break: Daniel comes w/me to Mall w/his friend!
8/91-4/01: I paid so Mark→LV on breaks.
After Divorce Child
Care and Work Changes
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I paid $400 for 2 to an inclusive Upper
Marlboro sport/gym camp=They’re tired!
I paid $50/week so a Mom takes them to
my home from there.
I do 2 weeks’ leave/paid $1,500 for Mark
for Berard auditory integration training in
VA.
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No more meds!=Break
After Divorce Child
Care and Work Changes
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I have 5 sisters. Twice 1 did free care for
Daniel after I ask. She does paid care for
2 sisters+others.
I do child support collection, networking
and learn how to lobby at work, etc.
10/92: I change jobs for more $.
W/airline frequent flyer accounts, free
airfares/1st class upgrades; free aides!
Mark Phillip Sherrett
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As Mark did Saturday Teen Adventure
hikes w/MNCPPC Sp Pops Division, I
paid $50+drop-off/pickup.
I need naps due to blood problem.
Taking him to malls=A bit of a break
as he memorized them.
Daniel Vincent Sherrett
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In 1996, Daniel did PGCC Children’s
Developmental Clinic 12 Saturdays
for HS community service hours per
me.
I do drop-off/pickup.
I get 4-hour break on same days as
Mark, but not @ same time.
The ARC of P.G. County
Respite Care House
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I paid $100/week for Mark if school
or sp ed camp are closed as I work or
for weekend time w/Daniel. Mark
last went in 1994 for 1 weekend.
6/09: He’s hot; unhappy; homesick;
and had little to do.
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I get him.
No break or volunteering for me.
Mark Phillip Sherrett
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1993-1999: ESY @ VA private sp ed school.
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1991-2001: In LV on Spring break or after ESY.
8/98: Gets $500/month SSI+we still get CS.
Then SSI is $60 less/month for years!
I paid airlines $25/each minor fee.
After 4/01, he won’t go.
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Bus ride=Before/after care.
1994: He’s OK home alone after school; w/Daniel or for
snow.
I do adult lifetime CS.
No more breaks.
1999-2000: Mark did ESY @ MD TT. MD paid.
My Need For Free Respite Care
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1:1 weekend-only respite care/rec
aides began for Mark after I lobby
DDA for them for 4 years.
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I’m single;
Have family duties;
Am in college (now doing an MPA);
Volunteer; and
Maybe I’ll get a Ph.D. or do law school.
Mark Phillip Sherrett
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5/01: I paid $200 for 1 weekend for
Mark at Melwood Kamp Akkomplish.
He’s homesick, despite burgers.
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No break to me.
6/01-8/01: Mark did MD TT.
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I paid $800.
School is done.
No more ESY/breaks for me.
Mark Phillip Sherrett/Metro Access
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6/01-8/01: Mark took MA home daily if it
came after TT.
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I call MA daily to verify it comes. I tell TT
staff.
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Rate: $5/day.
Drivers ignore $ but need directions!
If they call if MA is no-show, I must go get
him.=Job difficulties are a result.
Tho I gave MA dates, they go to TT site
after it ends until MA calls me on it!
Other Forms of Respite
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Some is by phone friends.
For years I did sp ed support groups
and ran 1! No breaks for me, but I
learned a lot.
A swim aide said she’d go to do
respite if needed.=Future break!
12/99-If Mark is w/me if I travel
=No break for me!
Daniel Vincent Sherrett
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16-18: Daniel works part time near
us and bought food.=Break for me!
Daniel got free room and board!
=Break for him!
12/01-10/09: As Daniel in Navy or
NY’s CIA, he pays his own airfare.
2-14 months go by without seeing
him.=I miss him!
Daniel Vincent Sherrett
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10/05-8/06: After Navy, he’s part-time @ 701 Restaurant
in D.C.; came by car/Metro w/me; came to Strayer w/me; is
in D.C., or eats. No break from him, but he pays rent $ and
buys his own food!
I pay NY’s CIA $ for him if needed, as all parents do.
9/06-10/09: He’s @ NY’s CIA. Breaks from him are
intermittent. He gets VA ed $, and has his own $.
11/09-6/10: He’s on day shift but I must drive him in on
weekends
7/10-Now: He’s on dinner shift and motor scooters to
Metro.
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He gives ideas on Mark.
As role model, he shaves, cooks, cleans, organizes and helps.
We ALL work to ensure Mark shaves!
Developmental Disabilities
Administration: 1:1 Rec Aide
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2000-2004: I lobby for 1:1 weekend-only
aides to take Mark to bowl, horseride, see
movies, eat out or do other rec acts.
A retired Mom w/son @ TT w/Mark gave
me idea. I call DDA+its nonprofits.
I have no luck trying to get 1 myself:
Wives of all I ask say, “No!”
I ask Mark’s case manager get weekendonly aides.
Developmental Disabilities
Administration: 1:1 Weekend Aide
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At DDA town meetings, I lobby its reps!
I email reps for Mark’s aides.
I lobby a rep by cell on NY Avenue to D.C.
to work, saying I may go to law school if
Mark got weekend-only aides! She said,
“Oh, no!”
Specs: No smoking; trained on autism in
adults; reliable cars; good drivers; flexible
on schedules; polite; respectful; role
models who shave if they’re men!
Strayer University/FAFSA
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2003: I enroll in Strayer and do
FAFSA papers anyway.
2004-2008: I did 1-3 B.S. classes
quarterly in person, on line/
asynchronous or both.
I read on Metro, as he bowls or rides.
6/07: I change jobs for more $.
1:1 Weekend-Only Aides
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9/07-4/08: Aides by a Southern MD
nonprofit per DDA come. Not all men;
some smoke; know autism in adults;
maybe good cars; drive well; are flexible
on schedules; polite; respectful; most men
shave!
I can sleep; read; do papers; shop; get
haircuts; see movies; eat; do laundry; visit
friends or my Mother; help 1 sister+her
family de-hoard the home in/out w/my
family or others.
1:1 Weekend-Only Aides
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Forms done so aides know his
behaviors, social or practical skills.
I vary rec activities so all benefit:
Renaissance Festival=Free for 1 aide.
Baltimore Project Open Sail/Ya Gotta
Regatta=Free lunch for aide.
Mark goes to College for Living=
PGCC.
1:1 Weekend-Only Aides
Problems: I Had To Do It All
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Some aides say they had long rides to us.
Some smoke in front of him.
Nonprofit has turnover.
Some aides are no-shows.
Some give me no cell #s.
Some are late.
One has car problems.
One takes Mark’s pouch w/her to DE.
1:1 Weekend-Only Aides Problems
I Had To Do It All
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3/08: At a meeting w/case manager, new
nonprofit manager+1 aide say Mark must
use MA! He barely talks!
4/08: I end aides by 1 nonprofit w/1 arm
in a sling after surgery; no AC in my 5speed car to go get it fixed; call nonprofit
+case managers after Saturday class in
Takoma Park.
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Supervisor didn’t tell aide it was final bowling
day=Party.
1:1 Weekend-Only Aides
Problems: I Had To Do It All
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In 18 months, main respite care staff
changed 4 times.
Tho I call or email Mark’s weekend
schedule weekly, no manager told aides.
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I got cell #s, emailed+called Friday ensuring
they come.
5/08: Mark’s case manager sought new
weekend-only aides for Mark.
1:1 Weekend-Only Aides: Problems
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5/08-9/09: I got no respite breaks
at all until new aides began.
6/08: I got a bachelor’s in busi
admin; graduating w/honors!
7/08: I start my MPA on line, 1
class/quarter, unsure if/when Mark
gets new aides.
1:1 Weekend-Only Aides: Problems
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9/08: Only case manager+me meet
manager of new nonprofit entity
FINAL MAIN RESPITE CARE REP FOR
PRIOR 1 CALLS AS WE MEET TO “SEE
HOW MARK IS DOING.” HE KNEW OF
IT AND CALLS AS A PRANK.
1:1 Weekend-Only Aides:
Respite Care/Break!
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6/9: Case manager/I met manager
(Mark was @ work) of new nonprofit
entity on respite care aides: Success!
She gets it! After 1-2 obstacles
overcome, Mark has weekend-only,
1:1 aides=Breaks for me+Mark is OK!
1:1 Weekend-Only Aides:
Respite Care/Break!
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Aides are flexible; understanding; patient;
fully trained; give me cell #s; are good
drivers; have empathy and drive well.
Breaks for me!
We call/email. I email items or give copies
so aides share. My emails are received.
The case manager knows it all.
If the nonprofit is faith-based is a nonissue.
1:1 Weekend-Only Aides:
Respite Care/Break!
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If 1 aide wants to bring a kid to a rec
event w/Mark for inclusion, OK.
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It means aide is good driver!
Prior nonprofit aides spoke of kids, but
didn’t bring them.
They seldom need directions.
Aides get $10 for gas by nonprofit
manager.
I pay for aide to attend events as if I’d go.
1:1 Weekend-Only Aides:
Respite Care/Break!
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Mark went w/1 aide+ her 3 kids to ICE! @
National Harbor in P. G. County. She sent
me pix of him. He had fun as I did a term
paper.
Mark has no meds and is calm
If an event doesn’t work for Mark, aides
are flexible and calm. How? I don’t know,
but it’s all a break for me, so I:
1:1 Weekend-Only Aides:
Respite Care/Break!
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Do term papers; shop; eat; sleep;
watch TV; see my Mother, Daniel,
friends or a movie; bake or cook
dinner; clean; study; network; get
haircuts or attend conferences
I get a break!
1:1 Weekend-Only Aides:
Respite Care/Break!
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Mark gets attention and is fine. I
don’t worry.
For questions, problems or concerns,
aides call me.
They know the schedule in advance.
I get a break!
Respite Care
Q. How long will I need respite care?
 A. How long will I live?
--------------------------------------------- Are there any other questions?
 Thank you all for coming here today.
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