MARYLAND RESPITE CARE COALITION, INC. “RESPITE: Create It!” The 2010 National Lifespan Respite Conference Hosted by The Maryland Respite Care Coalition, Inc. 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 • • • 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 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 • • • • 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 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 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 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 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 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 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 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 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 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 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 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 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 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!!! Child Versus Respite Care 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 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 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 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 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 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 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 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. 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 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. Notice I’m not in my Mother’s home weekends. Years 3-5/After Divorce Child Care and Work Changes 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 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 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 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 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 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 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. No more meds!=Break After Divorce Child Care and Work Changes 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 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 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 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. I get him. No break or volunteering for me. Mark Phillip Sherrett 1993-1999: ESY @ VA private sp ed school. 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. 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 1:1 weekend-only respite care/rec aides began for Mark after I lobby DDA for them for 4 years. 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 5/01: I paid $200 for 1 weekend for Mark at Melwood Kamp Akkomplish. He’s homesick, despite burgers. No break to me. 6/01-8/01: Mark did MD TT. I paid $800. School is done. No more ESY/breaks for me. Mark Phillip Sherrett/Metro Access 6/01-8/01: Mark took MA home daily if it came after TT. I call MA daily to verify it comes. I tell TT staff. 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 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 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 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. 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 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 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 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 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 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 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 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. Supervisor didn’t tell aide it was final bowling day=Party. 1:1 Weekend-Only Aides Problems: I Had To Do It All In 18 months, main respite care staff changed 4 times. Tho I call or email Mark’s weekend schedule weekly, no manager told aides. 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 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 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! 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! 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! If 1 aide wants to bring a kid to a rec event w/Mark for inclusion, OK. 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! 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! 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! 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.