Having Trouble finding Respite | Autism PDD

Nita,

I live in WNY. We have a service coordinator through one agency, but receive respite services through another agency (but through the same service coordinator). It certainly does get confusing.

If you are having trouble with your SC, ask to speak with his/her supervisor. Sometimes there just isn't a good fit between SC and client, and they may have another SC that would provide a better fit. A good supervisor will be able to work with you on this issue.

As for respite providers, we seem to have a shortage in our area. I would like to have 2 or 3 to choose from, because one respite provider will not always be available when we need them. However, there was only one available for our family, so that's where we are for now. Ask your SC what agencies in your area provide respite, then if necessary, contact those agencies yourself for more information. Believe me, having respite care is worth the extra work.

Good luck!!
Hi this question is for all of you who have respite care workers for your kids.How do you get one??? I was told by a friend of mine who has 3 kids on the specrtum that I needed to get a Service Coordinator so I did and at first I wasn't sure what they even do for you all I know is they provide you with links and help find respite workers. Well so far Michelle on this board has given me way more links and info (along with many others on this board) than this so called Service Coordinator. Well anyhow she has to vistit my son atleast once a month in order for us to keep our contract.Which is fine with me but that is all she has done. She is looking for a respite worker but has had no luck. I don't quite understand this by the way! I asked her if there were things such as educational tools that I needed for home for my son to help him when he is not in school if they could pay for them (we were told we qualified for family services ) and she replied with "well I am not sure I could ask my boss and get back to you " still haven't heard and we have had her as our Svc Coordin. since February. Still no respite worker either. She had suggested that I could find my own person and hire them and they would pay them...but here is the problem I don't know anyone hence the reason I needed a service coordinator!!!!! So has anyone had trouble finding respite or does anyone else have a Service coordinator ? If so is yours doing a better job than mine?? I am not sure what I can ask of mine or what I can even ask of a respite worker. Don't they atleast have to be qualified or knowledgeable of Autism?? I don't know why she would tell me to look around my area for a teenager who is good with kids... c'mon I have a hard enough time and I am his mother!! I know all States and areas are different I am in New York (central) but I think I have a crappy Service Coordinator what do I do about it?? Thanks

NO they don't have to be qualified in autism to work with kids on the spectrum. Some agencies train their workers to be able to deal with specific disabilities, others don't. Also in some states they have gotten stricker with the requirements for respite workers. It could be your state has a shortage right now. You can check for companies that provide in home health aid and see what their qualifications are for respite workers. I know here they have to be licensed if you go thru a agency. Or you can hire one yourself.

Tammy

Nita you need to get intouch with family resources coordinator yourself and ask specifically how to apply for what you need.

No, the respite provider doesnthave to be trained in anything they are just a babysitter. Here they have to be 18 and have a background check.

Start calling mental health special ed school churches, even hospitals and nursing homes day centers EVERYWHERE

here are a few other links.. I will keep looking for you

http://www.birf.info/support/caregivers/respite.html

Many agencies and organizations have information on respite care services. (For a referral, contact The National Respite Locator Service, operated by the ARCH National Resource Center: 1-800-773-5433

In general, to find respite care, seek out groups or professionals who work with people of your loved one's age group. For example, if your child is in preschool, contact the school and discuss the need for respite care with the staff. If there is a parent group associated with your school, or if there is a local parent group concerned with children who have needs similar to your child's, ask them. If your child is an adolescent, talk to the staff at his or her school or, again, identify parent groups in your area with needs similar to yours.

The following list presents some of the types of groups you may want to contact in seeking services. Many will be listed in your telephone book. If you experience difficulty locating the organization in your community, often a state contact can be made.

For further information and assistance, contact NICHCY, and be sure to ask for a NICHCY State Resource Sheet for your state.

State and Local Government Agencies

State Department of Mental Retardation
State Developmental Disabilities Council
State Program for Children with Special Health Care Needs
Departments of Health and Human Services, or Social Services
Department of Mental Health
State and local Departments of Education
State Protection and Advocacy Agency

State and Local Disability or Support Groups

The Arc
United Cerebral Palsy Associations, Inc.
Autism Society of America
Brain Injury Association
Mental Health Association and CASSP
Spina Bifida Association
National Easter Seal Society
Parent Training and Information Center
Parent-to-Parent
University Affiliated Program(s)
Community Services Board
YMCA/YWCA
Churches
Recreation Centers

Additional Organizations to contact are listed below.

ORGANIZATIONS

ARCH National Resource Center for Crisis Nurseries and Respite Care Services—Chapel Hill Training-Outreach Project, 800 Eastowne Drive, Suite 105, Chapel Hill, NC 27514. Telephone: (800) 473-1727; (919) 490-5577. The mission of the ARCH National Resource Center is to provide support to service providers through training, technical assistance, evaluation, and research. The Center provides a central contact point for the identification and dissemination of relevant materials to crisis nurseries and respite care programs. Numerous fact sheets and general resource sheets (including state contact sheets) are available about respite care and crisis nursery care. ARCH also operates the National Respite Locator Service who's mission is to help parents locate respite care services in their area. Please contact them at 1-800-773-5433.

The Arc (formerly the Association for Retarded Citizens of the United States)—500 E. Border Street, Suite 300, Arlington, TX 76010. Telephone: (800) 433-5255; (817) 261-6003; (817) 277-0553 (TT).

Association for the Care of Children's Health (ACCH)—7910 Woodmont Avenue, Suite 300, Bethesda, MD 20814. Telephone: (800) 808-2224; (301) 654-6549.

Association for Persons with Severe Handicaps (TASH)—29 W. Susquehanna Avenue, Suite 210, Baltimore, MD 21204. Telephone: (410) 828-8274; (410) 828-1306 (TT)

Autism Society of America—7910 Woodmont Avenue, Suite 650, Bethesda, MD 20814. Telephone: (800) 3-AUTISM; (301) 657-0881.

Brain Injury Association (formerly the National Head Injury Foundation)—1776 Massachusetts Avenue N.W., Suite 100, Washington, DC 20036. Telephone: (800) 444-6443; (202) Epilepsy Foundation of America—4351 Garden City Drive,

Landover, MD 20785. Telephone: (800) 332-1000 (outside of MD); (301)459-3700.

National Down Syndrome Congress—1605 Chantilly Drive, Suite 250, Atlanta, GA 30324. Telephone: (800) 232-6372; (404) 633-1555.

National Down Syndrome Society—666 Broadway, New York, NY 10012-2317. Telephone: (800) 221-4602; (212) 460-9330.

National Easter Seal Society—230 West Monroe Street, Suite 1800, Chicago, IL 60606. Telephone: (800) 221-6827; (312) 726-6200; (312) 726-4258 (TT).

Sick Kids (need) Involved People (SKIP)—545 Madison Avenue, 13th Floor, New York, NY 10022. Telephone: (212) 421-9160.

Spina Bifida Association of America—590 MacArthur Boulevard N.W., Suite 250, Washington, DC 20007. Telephone: (800) 621-3141; (202) 944-3285.

United Cerebral Palsy Associations, Inc. (UCPA)—1660 L Street N.W., Suite 700, Washington, DC 20036. Telephone: (800) 872-5827; (202) 842-1266.

FAMILY SUPPORT PROJECTS

American Association of University Affiliated Programs (AAUAP)—The AAUAP represents the national network of University Affiliated Programs (UAPs) in the United States. The UAPs provide interdisciplinary training for professionals and paraprofessionals and offer programs and services for children with disabilities and their families. Individual UAPs have staff with expertise in a variety of areas and can provide information, technical assistance, and inservice training to agencies, service providers, parent groups, and others. For information on a UAP in your area, write: AAUAP, 8630 Fenton Street, Suite 410, Silver Spring, MD 20910. Telephone: (301) 588-8252.

The Beach Center on Families and Disability—This center conducts research and training, and disseminates information relevant to families who have members with developmental disabilities or serious emotional disturbances. Write: The Beach Center on Families and Disability, The University of Kansas, 3111 Haworth Hall, Lawrence, KS 66045. Telephone: (913) 864-7600.

Children and Adolescent Service System Programs (CASSP)—CASSPs are federally-funded programs located throughout several states and localities, designed to improve service delivery for children and adolescents with emotional disorders. CASSP provides funding to states for research and training centers and for technical assistance activities. To contact a CASSP in your area, or to obtain a publications list and additional information, write: National Technical Assistance Center for Children's Mental Health, 3307 M Street, NW, Suite 401, Washington, DC 20007. Telephone: (202) 687-5000.

National Clearinghouse on Family Support and Children's Mental Health—The Center provides research and training, and disseminates information relative to serious emotional disorders and family support issues, including a newsletter. Write: National Clearinghouse on Family Support and Children's Mental Health, Portland State University, P.O. 751, Portland, OR 97207-0751. Telephone: 1-800-628-1696; (503) 7

------------------------------------------------------------ ---------------------------------

http://www.autism-pdd.net/respite.html

http://www.archrespite.org/archFS9.htm

New York