MARYLAND RESPITE CARE COALITION, INC. “RESPITE: Create It!”

MARYLAND RESPITE CARE MARYLAND RESPITE CARE COALITION, INC.COALITION, INC.

“RESPITE: Create It!”

The 2010 National Lifespan The 2010 National Lifespan Respite ConferenceRespite Conference

Hosted by Hosted by The The Maryland Respite Maryland Respite Care Coalition, Care Coalition, Inc.Inc.

In Partnership In Partnership With the ARCH With the ARCH National Respite National Respite Network and Network and the National the National Respite CoalitionRespite Coalition

Sheraton Baltimore City Center Hotel101 West Fayette Street

Baltimore, Maryland 21201Sunday, October 24, 2010-

Wednesday, October 27,2010

How Forms of and RespiteHow Forms of and RespiteCare Needs Have Changed ForCare Needs Have Changed For

My Family During Our LifetimesMy Family During Our Lifetimes

By Marie A. SherrettBy Marie A. SherrettDaughter/Parent/MPA Student,Daughter/Parent/MPA Student,

Strayer UniversityStrayer University • I’m a single parent of Mark, 30, I’m a single parent of Mark, 30,

w/autism+his main caregiver since 1986.w/autism+his main caregiver since 1986.• My son, Daniel, 27, after Navy and working My son, Daniel, 27, after Navy and working

part time at 701 Restaurant, graduated part time at 701 Restaurant, graduated 10/09 at NY’s Culinary Institute of America 10/09 at NY’s Culinary Institute of America and is on the wait staff @ SouWest and is on the wait staff @ SouWest Restaurant @ The Mandarin Oriental Hotel, Restaurant @ The Mandarin Oriental Hotel, D.C. He’ll be a wine expert.D.C. He’ll be a wine expert.

• After me, he’d care for Mark per a 4/05 After me, he’d care for Mark per a 4/05 signed General Power of Attorney.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 BackgroundMy Background

I’m in a D.C. multinational law I’m in a D.C. multinational law firm. I got a B.S. in busi firm. I got a B.S. in busi administration/ management administration/ management concentration 6/08, graduating concentration 6/08, graduating with honors from Strayer. I’m with honors from Strayer. I’m now earning an MPA there.now earning an MPA there.

I also have 30 Ph.D.’s in guilt.I also have 30 Ph.D.’s in guilt.

What I Hope You LearnWhat I Hope You Learn

• Today I hope you get more insight and Today I hope you get more insight and knowledge on stages/kinds of respite knowledge on stages/kinds of respite care; how it changes for caregivers or care; how it changes for caregivers or those cared for and get food for thought: those cared for and get food for thought:

• Needs or degrees of respite care vary over Needs or degrees of respite care vary over time, per disability and all involved.time, per disability and all involved.

• I welcome all questions: I’m not shy.I welcome all questions: I’m not shy.• My thought: Real respite care is free, not paid.My thought: Real respite care is free, not paid.

Variations On Elder CareVariations On Elder Care

Adults may care for elderly parents+ Adults may care for elderly parents+ share care w/family or others.share care w/family or others.

3 of my sisters do.3 of my sisters do. 1 sister’s husband is an only son of 1 sister’s husband is an only son of

his widowed Mother in a retirement his widowed Mother in a retirement site.site.

A sister+her husband share care A sister+her husband share care with his family of his Mother in the with his family of his Mother in the site.site.

My Widowed MotherMy Widowed Mother

88, in the site, has many disabilities. 88, in the site, has many disabilities. My 5 sisters, 4 brothers-in-law+10 My 5 sisters, 4 brothers-in-law+10 grandkids see her. My bro sees her at grandkids see her. My bro sees her at Xmas.Xmas.

She never drove, was deaf by 65 and She never drove, was deaf by 65 and won’t sign. We write it all out. She won’t sign. We write it all out. She has a TDD (telecom-for-the-deaf) has a TDD (telecom-for-the-deaf) machine. At 80 per me she was machine. At 80 per me she was finallyfinally correctly ID’d with mental illness. correctly ID’d with mental illness. Imagine that…….Imagine that…….

My MotherMy Mother

Mental illnesses may be in Mental illnesses may be in families of those w/autism.families of those w/autism.

1 sister is our Mother’s main 1 sister is our Mother’s main medical, $ and caregiver medical, $ and caregiver advocate.advocate.

Our Mother is a bit independent Our Mother is a bit independent but hospitalized 3 times in 2009. but hospitalized 3 times in 2009. She gets help herself.She gets help herself.

My MotherMy Mother

We shop for her; see her; clean her We shop for her; see her; clean her apartment; care for her; organize her; apartment; care for her; organize her; coordinate medical care; fill pill boxes; coordinate medical care; fill pill boxes; ensure she gets/takes meds; get her to ensure she gets/takes meds; get her to doctors; do laundry; get hair cuts; write doctors; do laundry; get hair cuts; write her friends; see her neighbors and ask her friends; see her neighbors and ask she not pull the emergency cord to go by she not pull the emergency cord to go by ambulance to ERs.ambulance to ERs.

We use a lot of gas.We use a lot of gas. 1 other resident hoped we’d help her, 1 other resident hoped we’d help her,

too.too.

My MotherMy Mother

For 9 months I emailed/wrote to get For 9 months I emailed/wrote to get her off all catalog mail lists or told her off all catalog mail lists or told charities to not send her $ requests.charities to not send her $ requests.

USPS is grateful!USPS is grateful! We may coordinate it all by cell as We may coordinate it all by cell as

we drive=Oprah Winfrey would not we drive=Oprah Winfrey would not like that.like that.

1 doing it all would need respite 1 doing it all would need respite care.care.

My MotherMy Mother

It creates stress as we work; It creates stress as we work; save leave; change jobs; raise save leave; change jobs; raise kids; pay bills; clean; shop; eat; kids; pay bills; clean; shop; eat; make meals; attend school or make meals; attend school or travel.travel.

If so, our Mother regresses! If so, our Mother regresses! Others must go see her more, as Others must go see her more, as in hurricane season.in hurricane season.

We monitor her mental health.We monitor her mental health.

My MotherMy Mother

In 1970, my married, working, In 1970, my married, working, bus-using Mother of 7+our Dad bus-using Mother of 7+our Dad w/3 jobs, cared for w/3 jobs, cared for herher Mother Mother w/no respite care. Her sister did w/no respite care. Her sister did not help.not help.

Our Grandmother died @ 72 in a Our Grandmother died @ 72 in a nursing home.nursing home.

My MotherMy Mother

As I get degrees, my ideas on As I get degrees, my ideas on care of our Mother+ 2 sisters are care of our Mother+ 2 sisters are heard by sisters w/college heard by sisters w/college degrees or who are getting more degrees or who are getting more degrees. Why is that?degrees. Why is that?

A sister nixed a A sister nixed a www.carepages.comwww.carepages.com web page on web page on our Mother due to privacy issues.our Mother due to privacy issues.

http://www.carepages.com/

Other Family Care IssuesOther Family Care Issues

1 sister+her family have mental 1 sister+her family have mental and medical issues. We’ve helped and medical issues. We’ve helped them since 2002, as w/a 2007 them since 2002, as w/a 2007 SSDI Application (awarded!).SSDI Application (awarded!).

It takes a village: 1 can’t do it all.It takes a village: 1 can’t do it all. Helping 1 sister=Respite care for Helping 1 sister=Respite care for

her.her. We may need to help another+her We may need to help another+her

family.family.

Other Family Care IssuesOther Family Care Issues

In LV my ex w/mental and medical issues cared In LV my ex w/mental and medical issues cared for his Mother + 2 adult disabled brothers.for his Mother + 2 adult disabled brothers.

She raised 1 niece after Social Services came She raised 1 niece after Social Services came to help her+my nephew w/autism. He’s in to help her+my nephew w/autism. He’s in group care. The parents died. My ExxonMobil group care. The parents died. My ExxonMobil niece remarried and is in TX.niece remarried and is in TX.

His Mother died 5/10 after 2 diabetes’ His Mother died 5/10 after 2 diabetes’ surgeries.surgeries.

My ex’s disabled bro is in her home.My ex’s disabled bro is in her home. Mark’s SSA $ by his Father retiring=$1,508 in Mark’s SSA $ by his Father retiring=$1,508 in

back SSA+$504 monthly starting 8/4=Pay bills!back SSA+$504 monthly starting 8/4=Pay bills! SSA was reimbursed $226 per its request!=Bill!SSA was reimbursed $226 per its request!=Bill! My ex takes meds for med/mental issues=VA.My ex takes meds for med/mental issues=VA.

Caregiver Health ProblemsCaregiver Health Problems

Stress=Health issues for caregivers of Stress=Health issues for caregivers of those w/disabilities or contributes to those w/disabilities or contributes to pre-existing health problems.pre-existing health problems.

Stress goes up if caregivers get no Stress goes up if caregivers get no respite care.respite care.

Respite care, a well-needed/well-earned Respite care, a well-needed/well-earned break and taxpayer right, rejuvenates break and taxpayer right, rejuvenates caregivers.caregivers.

No 1 person can do it all nor should they.No 1 person can do it all nor should they.

Mark Phillip SherrettMark Phillip Sherrett

In 2009 a sister asked why Daniel is as In 2009 a sister asked why Daniel is as he is now w/Mark as his brother? Here’s he is now w/Mark as his brother? Here’s why:why:

I used all respite care or breaks I could, I used all respite care or breaks I could, even if I paid and took it off my taxes.even if I paid and took it off my taxes.

Follow my $ outlays, WHICH WENT UP, Follow my $ outlays, WHICH WENT UP, UP, UP!UP, UP!

Start of Child/Respite CareStart of Child/Respite Care

Working in FL after Mark’s birth ended after Working in FL after Mark’s birth ended after 2 months paying $200 for unlicensed family 2 months paying $200 for unlicensed family child care.child care.

Free child care ended once he crawled.Free child care ended once he crawled. A FL teen got $50/month for 5 years as I A FL teen got $50/month for 5 years as I

typed for court reporters or for breaks.typed for court reporters or for breaks. She+1 brother were w/2 grandparents.She+1 brother were w/2 grandparents. I trained her, not knowing Mark had autism!I trained her, not knowing Mark had autism! Typing ended after Daniel, so I couldn’t pay.Typing ended after Daniel, so I couldn’t pay. Stress from no respite care=I got sick. Stress from no respite care=I got sick.

Paid Aide=Future ProfessorPaid Aide=Future Professor

Husband #3 was in HS w/her.Husband #3 was in HS w/her. They’re VA professors who want They’re VA professors who want

no kids!no kids!

-------------------------------------------------------------------------------------------- I never paid taxes on care I never paid taxes on care

providers I hired! Oops!!!providers I hired! Oops!!!

Child Versus Respite CareChild Versus Respite Care

Paid child care is if parents work full Paid child care is if parents work full time.time.

Good luck getting it for 1 w/autism.Good luck getting it for 1 w/autism. Are they trained? There’s always Are they trained? There’s always

turnover!turnover! Child care resource centers help. Those Child care resource centers help. Those

trained on autism will trained on autism will alwaysalways work. work. Respite care is needed for those caring Respite care is needed for those caring

for those w/disabilities.for those w/disabilities. It’s a break for caregivers.It’s a break for caregivers.

Year 1/After Divorce Child Year 1/After Divorce Child CareCare

Pawned 1 engagement ring for $ for 1 Pawned 1 engagement ring for $ for 1 month site child care. (Who got month site child care. (Who got Daniel home from there?)Daniel home from there?)

MD unlicensed family care providers MD unlicensed family care providers were untrained w/no ethics.were untrained w/no ethics.

Details are scary=I was naïve.Details are scary=I was naïve. The Father (no help then for his The Father (no help then for his

genetic mental issues) saw them 3 genetic mental issues) saw them 3 times from 1986-1987 and then came times from 1986-1987 and then came up.up.

Year 1/After Divorce Child Year 1/After Divorce Child CareCare

Child/respite care on 2 sons as I Child/respite care on 2 sons as I was w/my Mother, 2 sisters and 1 was w/my Mother, 2 sisters and 1 brother (who left later per me!):brother (who left later per me!):

Mark had free ESY.Mark had free ESY. I paid $200/month for family child I paid $200/month for family child

care providers.=Fired them.care providers.=Fired them. I paid airlines $25/each for fees to I paid airlines $25/each for fees to

get them to FL or NV=Break? OT get them to FL or NV=Break? OT $!$!

Year 2/After DivorceYear 2/After DivorceChild Care and Work ChangesChild Care and Work Changes

I change jobs for more $.I change jobs for more $. No free ESY for Mark again until 1993.No free ESY for Mark again until 1993. My Mother saw a teen ad for child care.My Mother saw a teen ad for child care. I call=She began.I call=She began. I paid $270/month to a hospital child care I paid $270/month to a hospital child care

site.site. I paid 1 sister $10/week to get Daniel home I paid 1 sister $10/week to get Daniel home

or teen walks him home.or teen walks him home. The Father has a local job and does 1 The Father has a local job and does 1

overnight/ week=I get a break but no OT $.overnight/ week=I get a break but no OT $.


Child support increase petition= Child support increase petition= problems=Phone harassment case.problems=Phone harassment case.

I’m in FL 2 days for 1 hearing w/2 I’m in FL 2 days for 1 hearing w/2 friends=Problem there!friends=Problem there!

Mark’s sp ed/early childhood Mark’s sp ed/early childhood center teacher said “autism.”center teacher said “autism.”

I read on it, join ASA and make I read on it, join ASA and make calls.calls.


After 1 year probation, the FatherAfter 1 year probation, the Father→→LV LV to be w/his Mother and work there.to be w/his Mother and work there.

Daniel tested for sp ed at 3; ID’d @ 9.Daniel tested for sp ed at 3; ID’d @ 9. My sons don’t see the Father 3 years My sons don’t see the Father 3 years

since I can’t pay airfares.since I can’t pay airfares. CS issues 1988-2009=SSA ends it 8/10.CS issues 1988-2009=SSA ends it 8/10. I paid for all visit airfares 1993-2001I paid for all visit airfares 1993-2001 CS=$200-$500/month at most.CS=$200-$500/month at most. 10/88: I change jobs for more $.10/88: I change jobs for more $.

Years 3-5/After DivorceYears 3-5/After DivorceChild Care and Work ChangesChild Care and Work Changes

I paid $270/month to a local hospital center I paid $270/month to a local hospital center child care site+I pay 1 staffer $50/month to child care site+I pay 1 staffer $50/month to take Daniel home since all sisters gone.take Daniel home since all sisters gone.

He attends weekly free MD National Capital He attends weekly free MD National Capital Park and Planning Commission day campPark and Planning Commission day camp

+I pay 1 teen $50/week to walk him home or +I pay 1 teen $50/week to walk him home or for Mark after he’s home by bus or they go for Mark after he’s home by bus or they go by Metro to me to eatby Metro to me to eat

I paid 1 teen $20/on snow days for 2 sonsI paid 1 teen $20/on snow days for 2 sons I paid 1 teen $50/week if school is closedI paid 1 teen $50/week if school is closed I paid $100/month to MDNCPPC for before I paid $100/month to MDNCPPC for before

care (I take Daniel)+I paid 1 teen $50/week.care (I take Daniel)+I paid 1 teen $50/week.


A teen w/my Mother, who got $600/ A teen w/my Mother, who got $600/ month in room/board/food, calls if my month in room/board/food, calls if my Mother has odd behaviors. We then Mother has odd behaviors. We then eat out.=$, again.eat out.=$, again.

I took few breaks in Years 1-5.I took few breaks in Years 1-5. Um, dating…….???Um, dating…….???

Mark’s on Ritalin 1984-1992= I get Mark’s on Ritalin 1984-1992= I get Rx’s by MD doctor after work w/2 Rx’s by MD doctor after work w/2 sons w/me= No break for me!sons w/me= No break for me!


I paid for Daniel’s MD soccer/t-ball class I paid for Daniel’s MD soccer/t-ball class w/pickup to/from by me or 1 teen=No w/pickup to/from by me or 1 teen=No break there!break there!

We see parks weekdays or weekends.We see parks weekdays or weekends. If I tired them out, I could sleep! If I tired them out, I could sleep! I paid for their movies once to be in mine I paid for their movies once to be in mine

alone later.=My breaks.alone later.=My breaks. I paid for Daniel’s weekend science I paid for Daniel’s weekend science

classes at Smithsonian as Mark and I are classes at Smithsonian as Mark and I are together.together. Notice I’m not in my Mother’s home Notice I’m not in my Mother’s home

weekends.weekends.


I paid $100/each for 16 Saturday Children’s I paid $100/each for 16 Saturday Children’s Developmental Clinics at PGCC for 2 to go Developmental Clinics at PGCC for 2 to go by bus and 1:1 aides. I do library books for by bus and 1:1 aides. I do library books for OT $. Then only Mark goes=Daniel is w/me OT $. Then only Mark goes=Daniel is w/me as I food shop.as I food shop.

No break/OT for me, yet I see parents.No break/OT for me, yet I see parents. I paid $100 for 2 camps w/families.I paid $100 for 2 camps w/families. No break for me: We got lost!No break for me: We got lost! I paid $100+ for 1 hotel stay w/free child I paid $100+ for 1 hotel stay w/free child

care by trained staff as I go to a care by trained staff as I go to a conference=1/2 break for me.conference=1/2 break for me.

After Divorce ChildAfter Divorce ChildCare and Work ChangesCare and Work Changes

1988-1992 teachers/staff in 1988-1992 teachers/staff in PGPSfor Mark are untrained on PGPSfor Mark are untrained on autism, but I only knew it later. autism, but I only knew it later.

I stay @ his school on leave.I stay @ his school on leave. No break there for naïve me.No break there for naïve me. 10/91: I change jobs for more $.10/91: I change jobs for more $. Year 6: Daniel does basketball=$.Year 6: Daniel does basketball=$.


I paid $200+ for Mark for MNCPPC I paid $200+ for Mark for MNCPPC Camp Champion in Summers: 1987-Camp Champion in Summers: 1987-1991.1991.

I paid 1 teen $50/week for 2 sons after I paid 1 teen $50/week for 2 sons after Mark came by bus.Mark came by bus.

I paid 1 teen $50/week for 2 sons if I paid 1 teen $50/week for 2 sons if schools/camps closed to walk them all schools/camps closed to walk them all over to tire them out!over to tire them out!

I paid $100 for Mark for 1 overnight trip I paid $100 for Mark for 1 overnight trip by MNCPPC Sp Pops Division.by MNCPPC Sp Pops Division.

Break for me for a bit=“Date” w/Daniel!Break for me for a bit=“Date” w/Daniel!


I met a Mother of 2 w/her Mother I met a Mother of 2 w/her Mother thru a parent group. She did thru a parent group. She did free child care for my sons as I free child care for my sons as I work if school’s closed. She’s in work if school’s closed. She’s in FL. We met if I’m there, but FL. We met if I’m there, but part: Her mental issues=layoffs. part: Her mental issues=layoffs. Her unmarried girls have 3 kids. Her unmarried girls have 3 kids. Her relatives ignore her.Her relatives ignore her.


Mid-1991-Mid-1992: For 1 year my Mother’s Mid-1991-Mid-1992: For 1 year my Mother’s home=Pick-up/drop-off.home=Pick-up/drop-off.

I pay 1 teen for after-care or on snow days.I pay 1 teen for after-care or on snow days. I’m home if school is closed or get care givers.I’m home if school is closed or get care givers. 6/91-8/01: I paid to send Daniel6/91-8/01: I paid to send Daniel→→LV on breaks.LV on breaks. 10/92: I change jobs for more $.10/92: I change jobs for more $. 1990’s: Mark attends Kids Enjoy Exercise Now1990’s: Mark attends Kids Enjoy Exercise Now

FreeFree No break: Daniel comes w/me to Mall w/his friend!No break: Daniel comes w/me to Mall w/his friend!

8/91-4/01: I paid so Mark8/91-4/01: I paid so Mark→→LV on breaks.LV on breaks.


I paid $400 for 2 to an inclusive Upper I paid $400 for 2 to an inclusive Upper Marlboro sport/gym camp=They’re Marlboro sport/gym camp=They’re tired!tired!

I paid $50/week so a Mom takes them I paid $50/week so a Mom takes them to my home from there.to my home from there.

I do 2 weeks’ leave/paid $1,500 for I do 2 weeks’ leave/paid $1,500 for Mark for Berard auditory integration Mark for Berard auditory integration training in VA.training in VA. No more meds!=BreakNo more meds!=Break


I have 5 sisters. Twice 1 did free care I have 5 sisters. Twice 1 did free care for Daniel for Daniel afterafter I ask. She does paid I ask. She does paid care for 2 sisters+others.care for 2 sisters+others.

I do child support collection, networking I do child support collection, networking and learn how to lobby at work, etc.and learn how to lobby at work, etc.

10/92: I change jobs for more $.10/92: I change jobs for more $. W/airline frequent flyer accounts, free W/airline frequent flyer accounts, free

airfares/1st class upgrades; free aides!airfares/1st class upgrades; free aides!


As Mark did Saturday Teen As Mark did Saturday Teen Adventure hikes w/MNCPPC Sp Adventure hikes w/MNCPPC Sp Pops Division, I paid $50+drop-Pops Division, I paid $50+drop-off/pickup.off/pickup.

I need naps due to blood I need naps due to blood problem.problem.

Taking him to malls=A bit of a Taking him to malls=A bit of a break as he memorized them.break as he memorized them.

Daniel Vincent SherrettDaniel Vincent Sherrett

In 1996, Daniel did PGCC In 1996, Daniel did PGCC Children’s Developmental Clinic Children’s Developmental Clinic 12 Saturdays for HS community 12 Saturdays for HS community service hours per me.service hours per me.

I do drop-off/pickup.I do drop-off/pickup. I get 4-hour break on same days I get 4-hour break on same days

as Mark, but not @ same time.as Mark, but not @ same time.

The ARC of P.G. CountyThe ARC of P.G. CountyRespite Care HouseRespite Care House

I paid $100/week for Mark if I paid $100/week for Mark if school or sp ed camp are closed school or sp ed camp are closed as I work or for weekend time as I work or for weekend time w/Daniel. Mark last went in 1994 w/Daniel. Mark last went in 1994 for 1 weekend.for 1 weekend.

6/09: He’s hot; unhappy; 6/09: He’s hot; unhappy; homesick; and had little to do.homesick; and had little to do. I get him.I get him. No break or volunteering for me.No break or volunteering for me.

Mark Phillip SherrettMark Phillip Sherrett 1993-1999: ESY @ VA private sp ed school.1993-1999: ESY @ VA private sp ed school.

Bus ride=Before/after care.Bus ride=Before/after care. 1994: He’s OK home alone after school; w/Daniel or 1994: He’s OK home alone after school; w/Daniel or

for snow.for snow. 1991-2001: In LV on Spring break or after 1991-2001: In LV on Spring break or after

ESY.ESY. 8/98: Gets $500/month SSI+we still get CS.8/98: Gets $500/month SSI+we still get CS. Then SSI is $60 less/month for years!Then SSI is $60 less/month for years! I paid airlines $25/each minor fee.I paid airlines $25/each minor fee. After 4/01, he won’t go.After 4/01, he won’t go.

I do adult lifetime CS.I do adult lifetime CS. No more breaks.No more breaks.

1999-2000: Mark did ESY @ MD TT. MD paid.1999-2000: Mark did ESY @ MD TT. MD paid.

My Need For My Need For FreeFree Respite Respite CareCare

1:1 weekend-only respite care/rec 1:1 weekend-only respite care/rec aides began for Mark after I aides began for Mark after I lobby DDA for them for 4 years.lobby DDA for them for 4 years. I’m single;I’m single; Have family duties;Have family duties; Am in college (now doing an MPA);Am in college (now doing an MPA); Volunteer; and Volunteer; and Maybe I’ll get a Ph.D. or do law Maybe I’ll get a Ph.D. or do law

school.school.


5/01: I paid $200 for 1 weekend 5/01: I paid $200 for 1 weekend for Mark at Melwood Kamp for Mark at Melwood Kamp Akkomplish. He’s homesick, Akkomplish. He’s homesick, despite burgers.despite burgers. No break to me.No break to me.

6/01-8/01: Mark did MD TT.6/01-8/01: Mark did MD TT. I paid $800.I paid $800. School is done.School is done. No more ESY/breaks for me.No more ESY/breaks for me.

Mark Phillip Sherrett/Metro Mark Phillip Sherrett/Metro AccessAccess

6/01-8/01: Mark took MA home daily if 6/01-8/01: Mark took MA home daily if it came after TT.it came after TT. Rate: $5/day.Rate: $5/day. Drivers ignore $ but need directions!Drivers ignore $ but need directions!

I call MA daily to verify it comes. I tell I call MA daily to verify it comes. I tell TT staff.TT staff. If they call if MA is no-show, I must go get If they call if MA is no-show, I must go get

him.=Job difficulties are a result.him.=Job difficulties are a result. Tho I gave MA dates, they go to TT site Tho I gave MA dates, they go to TT site

after it ends until MA calls me on it!after it ends until MA calls me on it!

Other Forms of RespiteOther Forms of Respite

Some is by phone friends.Some is by phone friends. For years I did sp ed support For years I did sp ed support

groups and ran 1! No breaks for groups and ran 1! No breaks for me, but I learned a lot.me, but I learned a lot.

A swim aide said she’d go to do A swim aide said she’d go to do respite if needed.=Future break!respite if needed.=Future break!

12/99-If Mark is w/me if I travel 12/99-If Mark is w/me if I travel =No break for me!=No break for me!

Daniel Vincent SherrettDaniel Vincent Sherrett 16-18: Daniel works part time 16-18: Daniel works part time

near us and bought food.=Break near us and bought food.=Break for me!for me!

Daniel got free room and board! Daniel got free room and board! =Break for him! =Break for him!

12/01-10/09: As Daniel in Navy 12/01-10/09: As Daniel in Navy or NY’s CIA, he pays his own or NY’s CIA, he pays his own airfare. 2-14 months go by airfare. 2-14 months go by without seeing him.=I miss him!without seeing him.=I miss him!

Daniel Vincent SherrettDaniel Vincent Sherrett

10/05-8/06: After Navy, he’s part-time @ 701 10/05-8/06: After Navy, he’s part-time @ 701 Restaurant in D.C.; came by car/Metro w/me; came to 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, Strayer w/me; is in D.C., or eats. No break from him, but he pays rent $ and buys his own food!but he pays rent $ and buys his own food!

I pay NY’s CIA $ for him if needed, as all parents do.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 9/06-10/09: He’s @ NY’s CIA. Breaks from him are

intermittent. He gets VA ed $, and has his own $.intermittent. He gets VA ed $, and has his own $. 11/09-6/10: He’s on day shift but I must drive him in 11/09-6/10: He’s on day shift but I must drive him in

on weekendson weekends 7/10-Now: He’s on dinner shift and motor scooters 7/10-Now: He’s on dinner shift and motor scooters

to Metro.to Metro. He gives ideas on Mark.He gives ideas on Mark. As role model, he shaves, cooks, cleans, organizes and As role model, he shaves, cooks, cleans, organizes and

helps.helps. We ALL work to ensure Mark shaves!We ALL work to ensure Mark shaves!

Developmental Disabilities Developmental Disabilities Administration: 1:1 Rec AideAdministration: 1:1 Rec Aide

2000-2004: I lobby for 1:1 weekend-2000-2004: I lobby for 1:1 weekend-only aides to take Mark to bowl, only aides to take Mark to bowl, horseride, see movies, eat out or do horseride, see movies, eat out or do other rec acts.other rec acts.

A retired Mom w/son @ TT w/Mark gave A retired Mom w/son @ TT w/Mark gave me idea. I call DDA+its nonprofits. me idea. I call DDA+its nonprofits.

I have no luck trying to get 1 myself: I have no luck trying to get 1 myself: Wives of all I ask say, “No!”Wives of all I ask say, “No!”

I ask Mark’s case manager get I ask Mark’s case manager get weekend-only aides.weekend-only aides.

Developmental Disabilities Developmental Disabilities Administration: 1:1 Weekend Administration: 1:1 Weekend

AideAide At DDA town meetings, I lobby its reps!At DDA town meetings, I lobby its reps! I email reps for Mark’s aides.I email reps for Mark’s aides. I lobby a rep by cell on NY Avenue to I lobby a rep by cell on NY Avenue to

D.C. to work, saying I may go to law D.C. to work, saying I may go to law school if Mark got weekend-only aides! school if Mark got weekend-only aides! She said, “Oh, no!”She said, “Oh, no!”

Specs: No smoking; trained on autism Specs: No smoking; trained on autism in adults; reliable cars; good drivers; in adults; reliable cars; good drivers; flexible on schedules; polite; flexible on schedules; polite; respectful; role models who shave if respectful; role models who shave if they’re men!they’re men!

Strayer University/FAFSAStrayer University/FAFSA

2003: I enroll in Strayer and do 2003: I enroll in Strayer and do FAFSA papers anyway.FAFSA papers anyway.

2004-2008: I did 1-3 B.S. classes 2004-2008: I did 1-3 B.S. classes quarterly in person, on line/ quarterly in person, on line/ asynchronous or both.asynchronous or both.

I read on Metro, as he bowls or I read on Metro, as he bowls or rides.rides.

6/07: I change jobs for more $.6/07: I change jobs for more $.

1:1 Weekend-Only Aides1:1 Weekend-Only Aides

9/07-4/08: Aides by a Southern MD 9/07-4/08: Aides by a Southern MD nonprofit per DDA come. Not all men; nonprofit per DDA come. Not all men; some smoke; know autism in adults; some smoke; know autism in adults; maybe good cars; drive well; are maybe good cars; drive well; are flexible on schedules; polite; flexible on schedules; polite; respectful; most men shave!respectful; most men shave!

I can sleep; read; do papers; shop; I can sleep; read; do papers; shop; get haircuts; see movies; eat; do get haircuts; see movies; eat; do laundry; visit friends or my Mother; laundry; visit friends or my Mother; help 1 sister+her family de-hoard the help 1 sister+her family de-hoard the home in/out w/my family or others.home in/out w/my family or others.

1:1 Weekend-Only Aides1:1 Weekend-Only Aides

Forms done so aides know his Forms done so aides know his behaviors, social or practical skills.behaviors, social or practical skills.

I vary rec activities so all benefit:I vary rec activities so all benefit: Renaissance Festival=Free for 1 Renaissance Festival=Free for 1

aide.aide. Baltimore Project Open Sail/Ya Baltimore Project Open Sail/Ya

Gotta Regatta=Free lunch for aide.Gotta Regatta=Free lunch for aide. Mark goes to College for Living= Mark goes to College for Living=

PGCC.PGCC.

1:1 Weekend-Only Aides 1:1 Weekend-Only Aides Problems: I Had To Do It AllProblems: I Had To Do It All

Some aides say they had long rides to Some aides say they had long rides to us.us.

Some smoke in front of him.Some smoke in front of him. Nonprofit has turnover.Nonprofit has turnover. Some aides are no-shows.Some aides are no-shows. Some give me no cell #s.Some give me no cell #s. Some are late.Some are late. One has car problems.One has car problems. One takes Mark’s pouch w/her to DE.One takes Mark’s pouch w/her to DE.

1:1 Weekend-Only Aides 1:1 Weekend-Only Aides Problems I Had To Do It AllProblems I Had To Do It All

3/08: At a meeting w/case manager, 3/08: At a meeting w/case manager, new nonprofit manager+1 aide say new nonprofit manager+1 aide say Mark must use MA! He barely talks!Mark must use MA! He barely talks!

4/08: I end aides by 1 nonprofit w/1 4/08: I end aides by 1 nonprofit w/1 arm in a sling after surgery; no AC in arm in a sling after surgery; no AC in my 5-speed car to go get it fixed; call my 5-speed car to go get it fixed; call nonprofit +case managers after nonprofit +case managers after Saturday class in Takoma Park.Saturday class in Takoma Park. Supervisor didn’t tell aide it was final Supervisor didn’t tell aide it was final

bowling day=Party.bowling day=Party.

1:1 Weekend-Only Aides 1:1 Weekend-Only Aides Problems: I Had To Do It AllProblems: I Had To Do It All

In 18 months, main respite care staff In 18 months, main respite care staff changed 4 times.changed 4 times.

Tho I call or email Mark’s weekend Tho I call or email Mark’s weekend schedule weekly, no manager told schedule weekly, no manager told aides.aides. I got cell #s, emailed+called Friday I got cell #s, emailed+called Friday

ensuring they come.ensuring they come. 5/08: Mark’s case manager sought 5/08: Mark’s case manager sought

new weekend-only aides for Mark.new weekend-only aides for Mark.

1:1 Weekend-Only Aides: 1:1 Weekend-Only Aides: ProblemsProblems

5/08-9/09: I got no respite 5/08-9/09: I got no respite breaks at all until new aides breaks at all until new aides began.began.

6/08: I got a bachelor’s in busi 6/08: I got a bachelor’s in busi admin; graduating w/honors!admin; graduating w/honors!

7/08: I start my MPA on line, 1 7/08: I start my MPA on line, 1 class/quarter, unsure if/when class/quarter, unsure if/when Mark gets new aides.Mark gets new aides.

1:1 Weekend-Only Aides: 1:1 Weekend-Only Aides: ProblemsProblems

9/08: Only case manager+me 9/08: Only case manager+me meet manager of new nonprofit meet manager of new nonprofit entityentity

FINAL MAIN RESPITE CARE REP FINAL MAIN RESPITE CARE REP FOR PRIOR 1 CALLS AS WE MEET FOR PRIOR 1 CALLS AS WE MEET TO “SEE HOW MARK IS DOING.” TO “SEE HOW MARK IS DOING.” HE KNEW OF IT AND CALLS AS A HE KNEW OF IT AND CALLS AS A PRANK. PRANK.

1:1 Weekend-Only Aides:1:1 Weekend-Only Aides:Respite Care/Break!Respite Care/Break!

6/9: Case manager/I met 6/9: Case manager/I met manager (Mark was @ work) of manager (Mark was @ work) of new nonprofit entity on respite new nonprofit entity on respite care aides: care aides: SuccessSuccess!!

She gets it!She gets it! After 1-2 obstacles After 1-2 obstacles overcome, Mark has weekend-overcome, Mark has weekend-only, 1:1 aides=Breaks for only, 1:1 aides=Breaks for me+Mark is OK!me+Mark is OK!

1:1 Weekend-Only Aides:1:1 Weekend-Only Aides: Respite Care/ Respite Care/BreakBreak!!

Aides are flexible; understanding; Aides are flexible; understanding; patient; fully trained; give me cell #s; patient; fully trained; give me cell #s; are good drivers; have empathy and are good drivers; have empathy and drive well. Breaks for me!drive well. Breaks for me!

We call/email. I email items or give We call/email. I email items or give copies so aides share. My emails are copies so aides share. My emails are received. The case manager knows it received. The case manager knows it all.all.

If the nonprofit is faith-based is a non-If the nonprofit is faith-based is a non-issue.issue.

1:1 Weekend-Only Aides:1:1 Weekend-Only Aides: Respite Care/Break! Respite Care/Break!

If 1 aide wants to bring a kid to a rec If 1 aide wants to bring a kid to a rec event w/Mark for inclusion, OK.event w/Mark for inclusion, OK. It means aide is good driver!It means aide is good driver!

Prior nonprofit aides spoke of kids, but Prior nonprofit aides spoke of kids, but didn’t bring them.didn’t bring them.

They seldom need directions. They seldom need directions. Aides get $10 for gas by nonprofit Aides get $10 for gas by nonprofit

manager.manager. I pay for aide to attend events as if I’d I pay for aide to attend events as if I’d

go.go.


Mark went w/1 aide+ her 3 kids to Mark went w/1 aide+ her 3 kids to ICE! @ National Harbor in P. G. ICE! @ National Harbor in P. G. County. She sent me pix of him. He County. She sent me pix of him. He had fun as I did a term paper.had fun as I did a term paper.

Mark has no meds and is calmMark has no meds and is calm If an event doesn’t work for Mark, If an event doesn’t work for Mark,

aides are flexible and calm. How? I aides are flexible and calm. How? I don’t know, but it’s all a break for don’t know, but it’s all a break for me, so I:me, so I:


Do term papers; shop; eat; Do term papers; shop; eat; sleep; watch TV; see my Mother, sleep; watch TV; see my Mother, Daniel, friends or a movie; bake Daniel, friends or a movie; bake or cook dinner; clean; study; or cook dinner; clean; study; network; get haircuts or attend network; get haircuts or attend conferencesconferences

I get a break!I get a break!


Mark gets attention and is fine. I Mark gets attention and is fine. I don’t worry.don’t worry.

For questions, problems or For questions, problems or concerns, aides call me.concerns, aides call me.

They know the schedule in They know the schedule in advance.advance.

I get a break!I get a break!

Respite CareRespite Care

Q. How long will I need respite Q. How long will I need respite care?care?

A. How long will I live?A. How long will I live?

-------------------------------------------------------------------------------------------- Are there any other questions? Are there any other questions? Thank you all for coming here Thank you all for coming here

today.today.

Documents

MARYLAND RESPITE CARE COALITION, INC. “RESPITE: Create It!”