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Respite Care provides relief for family caregivers

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ROCHELLE B. BIRKELO
November 20, 2007
— Family caregiving is everybodyís business.

Itís a mother who provides everyday care to her developmentally disabled child, who lives with her.


Itís a husband who feeds, bathes and clothes his aging wife who is in the final stages of life.


Itís a daughter-in-law who visits her husbandís parents daily to make sure they are taking their medication.


Half of all caregivers provide care for at least eight hours a week, and 30 percent provide less than 8 hours of care per week, according to the UW Extension.


But that leaves a fifth of the caregivers providing 40 hours or more devoted to retirement-age adults, working-age adults and children younger than 18. As baby boomers age, that number likely will rise rapidly.


Herein lies the importance of Family Respite Care Services, a nonprofit organization that provides services to families that have a child or children living in the home with a disability, special health care needs, and/or mental health illness.


Rose Helms answers some questions she and Family Respite Care Servicesí co-director Michelle Sturz often are asked about the agency they lead.


Q: What is Family Respite Care Servicesí mission?


A: Family Respite Care Services is a nonprofit organization that provides services to families that have a child or children living in the home with a disability, special health care needs, and/or mental health illness.


Our mission is to recruit and professionally support Respite Care providers and promote support and resources for caregivers.


Services are provided through four programs (see sidebar), an annual statewide conference, and a statewide fund, the Reye Jean Timmer Memorial Fund.


Q: What is respite?


A: It is temporary relief for caregivers and families who are caring for people with disabilities or other special needs. People often compare respite to baby-sitting. The difference is families wouldnít be able to hire the average person or high schooler to ďbaby-sitĒ kids with special needs. Someone experienced with the disabilities and all that comes with it such as behavioral challenges, communication, routine, consistency and diet is needed to provide respite.


Q: Who can use the services that Family Respite Care Services offers?


A: Parents who have a child with a developmental disability, cognitive disability, special health care needs and/or mental health behavioral challenges.


And because there are two other local nonprofits managing funds by similar funding sources, an intake process is done when a parent calls our office to inquire about our programs or submits an application.


After reviewing an application or the needs of a parent calling our office, we follow up by sending a parent the necessary paperwork or referring that parent to another possible resource. And because there is another nonprofit that offers program services exactly like the Respite Care Program, a parent has the right to choose which organization will best meet his or her needs once the intake process is completed.


Q: How accessible are services and programs offered by Family Respite Care Services?


A: Anyone can access information about our programs by calling our office or visiting our Web site. Program application for our Respitality program and the registration form for Sibís Day Camp are both accessible on our Web site.


If a parent or interested person wants to talk with someone one-on-one about our programs, they may stop in our office as well.


Respite care through the registry program, however, is difficult to access due to inadequate funds. That can mean up to four-year waits for families to get financial aid to help pay for the service.


Families also are challenged to find qualified respite providers to deliver the direct care needed.


Q: Are the services and programs at Family Respite Care Services affordable?


A: Yes. There are no fee requirements for our Respitality, Respite Registry, Respite Care or Reye Jean Timmer Memorial Fund. However, there is an annual registration fee of $55 per child for Rock County residents who wish to send their children to Sibís Day Camp and a $65 registration fee per child for anyone outside of Rock County.


If a parent is unable to pay the registration fee due to a financial hardship or because the parent has more than one child to send to Sibís Day Camp, we work with the parent by reviewing funding sources available to them to cover the expense. If no other source of funding is available to the parent, we then can offer a full or partial scholarship.


The Statewide Respite Conference, held the first Wednesday in October, also is affordable with early registration fees of $20 for a parent, $25 for an adult 18 or older, and $30 for a professional. The registration fee goes up as the conference date gets closer and for on-site registration. For financial assistance for Sibís Day Camp or our Statewide Respite Conference, a parent can call our office.


Q: What volunteer opportunities are available with Family Respite Care Services?


A: Many and a variety from serving on the board and various committees in addition to Sibís Day Camp and helping at the annual conference. Those might involve providing transportation, distributing flyers, getting involved in fund-raising and attending meetings.


Q: What is the Statewide Respite Conference?


A: It is an annual training, resource and networking opportunity for anyone interested in, involved with or who lives with the issue of respite care.


Whether someone is a parent, caregiver, professional or provider, all are invited to register for the conference to meet and hear experts present information helpful to providing respite care.


Respite resources statewide as well as local and statewide organizations and businesses participate as speakers, exhibitors, or both.


The conference also provides free, on-site child care coordinated by a licensed day-care provider.


The conference is sponsored by donations and sponsors statewide to keep registration fees affordable. Scholarships are offered to parents and might include registration fee, lodging, and/or a travel stipend. For a scholarship, a parent should call our office.


FOR HELP
Contact Family Respite Care Services at (608) 758-0956; 205 N. Main St., Suite 102, Janesville; www.rockcountyrespite.org.

Office hours are 9 a.m. to 2 p.m. Tuesdays and Fridays, while office hours vary Mondays, Wednesdays and Thursdays.


SIBíS DAY CAMP

Sibís Day Camp is the third Saturday of every month, except August, from 9 a.m. to 1 p.m. in Suite 102 of the United Way of North Rock County building, 205 N. Main St., Janesville.


However, the Dec. 15 camp will be replaced with a Night of Respite, for parents that have a child with special needs and/or a disability, from 6:45 to 8:45 p.m. in the United Way building.


Camp participants must complete a registration form, online at www.rockcountyrespite.org, pay the $55 annual fee, support Sibís Day Camp rules, consider volunteering for Family Respite Care Service and refer families who would benefit from Family Respite Care Services.

Each camper must bring a sack lunchóno sodaóand a water bottle.


Camp goals are to provide:


-- Participants of parents or siblings with special needs an opportunity to meet others like themselves in a relaxed, recreational setting.


-- Participants with opportunities to discuss common joys and concerns with others of parents or siblings with special health care needs and/or disabilities.


-- Participants with an opportunity to learn how others handle situations commonly experienced by family members who have parents or siblings with special health care needs and/or disabilities.


-- Participants with an opportunity to learn more about the implications of their parentís or siblings special health care needs and/or disabilities.


-- Parents, family members and other professionals with opportunities to learn more about the concerns and opportunities frequently experienced by the participants of parents or siblings with special health care needs and/or disabilities.


FAMILY RESPITE CARE SERVICES PROGRAMS

-- Sibís Day CampóOften siblings feel isolated and in the shadow of their brothers and sisters who have special needs. Sibís Day Camp gives siblings of children with special needs something just for them. The camp has opportunities for independent expression as well as group activities and sports. Crafts and games are also part of the program. Camp participants have an opportunity to identify with peers who have a brother or sister with a disability in a nonthreatening way. They also get to spend time with others who have a sibling with a disability.


-- Respite RegistryóRespite care is the most requested service from primary caregivers and the most difficult to access. Funding is usually so inadequate that families have to wait as long as four years to receive financial aid to help pay for the service. Family Respite Care Services actively recruits people to provide respite care. Each respite provider who joins the registry receives an orientation and the opportunity for continued professional technical assistance and support. Contact information for respite providers on the local registry is available to caregivers.


-- RespitalityóThis is an alternative to traditional respite care. Traditionally, respite care is funded according to a specific diagnosis. However, often respite care is needed when there might be no diagnosed disability. So families in that situation as well as families on the waiting lists qualify for Respitality. Respitality also has a community component of business collaboration. Several local businesses have agreed to provide free or low-cost services that enable the agency to put together an entertainment package for the families who qualify for the program. Those packages can include dining, lodging and entertainment activities. Respitality can range from a partial day of respite to 48 hours.


-- Respite Care ProgramóThe Respite Care program serves families of children up to age 21, with developmental disabilities and allows families to receive a break from day-to-day demands of parenting a child with special needs. In Rock County and throughout the state, families are faced with long waiting lists for ongoing support and for their respite needs. Family Respite Care Services uses a needs-based approach to help families customize respite care to meet their familiesí needs.



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