What is Autism Respite Services?

Respite services give families time away from taking care of their family member who has a disability. Respite allows family members to go shopping, attend a wedding or funeral, or to just relax and stay at home. This qualifed care may be provided in your home, at a central location in the community, or as a recreational or social activity in the community and may be planned or urgent. Your family member will be supervised and cared for during the time spent away from family.

Services are generally funded in full or subsidized by state Home and Community-Based Medicaid Waivers. Although there are some not-for-profit agencies who are given public donations and grants to provide free or low cost respite services to families of individuals with developmental disabilities. Contact your local Developmental Disabilities Services Office in your state for more information on how to obtain respite services for your son or daughter.

Respite Care for Children with Autism

Purpose

Families who have a child with autism often experience ongoing stress. Aspects of the family’s life that may be impacted by a family member with autism include family recreation, finances, social relations with friends, relatives, spouses and neighbors, and the emotional, physical, and mental well-being of parents and siblings. Because of the additional care required by a child with autism, families identify respite care as a basic need, with the need increasing as the child gets older. Families who report less stress usually are the recipients of formal support services, such as respite care. Respite care for families who have a child with autism helps maintain family stability and may provide opportunities for the child to participate in special activities.

All children who are autistic do not display the same characteristics. The following characteristics are among the most common:

Impairment in Socialization

  • Lack of awareness of others
  • Social aloofness
  • Lack of cooperative and imaginative play
  • Does not imitate
  • Does not seek comfort or cuddle as an infant

Language/Communication Deficits

  • Language is not used in a communicative function, instead there may be immediate or delayed echolalia (i.e., what is said to the child is mechanically repeated); preservation (i.e., the repeating of phrases of speech over and over); pronominal reversal (i.e., The pronouns "I" and "you" are reversed, so that the child may say, "You want a cookie," when s/he desires a cookie)
  • Abnormal pitch, rate, rhythm, and/or intonation
  • Lack of appropriate nonverbal communication (e.g., eye contact, gestures, pointing, postures)

Abnormal Responses to the Environment
  • Stereotypes or self-stimulatory behaviors (e.g., rocking)
  • Resistance to change
  • Preoccupation with parts of objects, or an attachment to unusual objects

Behavioral Concerns

  • Self-injurious behavior (e.g., head banging, biting)
  • Aggression
  • Tantrums


Inconsistent Sensory Responses
  • May appear as if s/he is deaf (e.g. no reaction to very loud noises)
  • Stimulus over selectivity (e.g., very sensitive to very soft noises)
  • Apparent insensitivity to pain

Program Considerations

Provider Training

Providers who are working with children with autism should be trained about the characteristics of autism. Because of these unique characteristics, children with autism typically require specialized therapeutic and educational services. Respite care providers should be well trained in the basic principles of applied behavior analysis. Training should also include information on communication, behavior management, developmentally appropriate instructional strategies, social skills and incidental teaching.

Child Care Provision

1.   Respite care providers should meet with each family before beginning the provision of child care to discuss the child's routines and established patterns. This helps ensure consistency of care for the child and develops a sense of trust between the family, child, and provider. The need for predictability, structure and routine is an important element when providing respite care for children with autism. Children with autism typically insist on sameness. When the environment is altered, they often become anxious. Respite programs should:

  • Establish routines: set specific times for certain activities, such as snack time, naps, toileting.
  • Be consistent: children with autism experience difficulty in learning. Often, they are unable to generalize what they learn across people, settings, or situations. However, if persons caring for children with autism are consistent, the children do not need to spend as much time testing limits.

2.   Respite programs should address the need for behavioral intervention. Behavioral approaches have proven successful in remediating behavioral excesses (e.g., tantrums), as well as behavioral deficits (e.g., lack of self-help skills).

  • Use redirection: when children with autism are engaging in inappropriate behavior, redirecting the child to another, more appropriate activity may be effective.
  • Use rewards: choose rewards that are meaningful to the child. The rewards must be individualized, and may require some creativity. For example, some children with autism become attached to specific objects, such as a familiar piece of clothing. Extra time with that object could be a reward.

3.   Respite programs should incorporate educational components to assist in completing activities of daily living.
  • Use clear and simple instructions: due to the attentional problems that children with autism often experience, it is helpful to keep instructions short and concise.
  • Use prompts and teach in small steps: verbal instructions, gestures, or physical assistance are three prompts that are often used in working with children with autism. Use only as much prompting as is necessary for the child to complete the task, to ensure the child's is active participation. In addition to the use of prompts, it is helpful to divide the task into smaller steps. For example, if the child was being instructed to pull down his/her pants for toileting, the first step may consist of having the child only grasp the waistband; the second step could be pulling the pants over his/her hips, etc. The child is taught one step at a time, and does not move onto the next step until s/he can successfully complete the previous step.

Conclusion

Respite care for families of children with autism provides assistance through the provision of emergency and planned care as well as access to other family support services.

References
American Psychiatric Association. (1987). Diagnostic and Statistical Manual of Mental Disorders, (3rd ed., rev.). Washington, DC Cohen, D. & Donnellan, A. (Eds.). (1987). Handbook of Autism and Pervasive Developmental Disorders, New York: John Wiley. (Available from John Wiley & Sons, 605 Third Avenue, New York, New York 10016).
Powers, M.D. (Ed.). (1989). Children with Autism: A Parents’ Guide. Rockville, MD: Woodbine House. (Available from Woodbine House, 5615 Fishers Lane, Rockville, Maryland 20852; (800) 843-7323).
Schopler, E., & Mesibov, G.B. (Eds.). (1983). Autism in Adolescents and Adults. New York: Plenum Press. (Available from Plenum Press, 233 Spring Street, New York, New York 10013).
Schopler, E., & Mesibov, G.B. (Eds.). (1984). The Effects of Autism on the Family. New York: Plenum Press. (Available from Plenum Press, 233 Spring Street, New York, New York 10013).

About the Author: Marie Taras, Ph.D. is the Director of the Autism Support Center which provides respite care and other services to families who have children with autism in northeast Massachusetts.

Source: ARCH Fact Sheet Number 9, May, 1992

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Information Every Caregiver Should Have

Respite workers and caregivers should immediately have available to them detailed information directly related to your loved one’s personal care and preferences. Below is a list of general categories which may be useful to help you gather this information for your caregiver.

Emergency Contact Information

Name, Birthdate, Social Security number;
Emergency contact person information, and their relationship to your child;
Emergency physician, Insurance policy/number

Family Information

Disability/Special Care Needs (e.g. hearing, vision, mobility, communication)
Parent Contact Information (include cell phone and pager numbers)
Others in Household (e.g. brothers, sisters, grandparents)
Pets and instructions

Behaviors

What rewards do you use for good behavior?
What methods of discipline do you use?
Describe any unique behaviors and typical responses.

Seizures

Does the person have seizures? If yes, describe in detail:

How long does a seizure usually last?
What happens before a seizure?
What happens during a seizure?
Describe what to do during a seizure.
How should seizure be recorded?
Other information.

Medications/Medical Information

Name of medication, prescription number, prescribing physician name & phone number
What dosage, how often is it given, at what time given, any side effects, purpose for medication
Date of last tetanus shot.
List known allergies to any medications.
List names, contact information to other physicians.
Provide name and contact information of Emergency physician.
Insurance policy/number.

Adaptive Equipment

Does the person use any special adaptive equipment? If yes, explain.
Where is equipment kept?
How is equipment used?
How long should equipment be used?
At what time should the equipment be used?
How long has s/he been using the equipment?
Contact name and phone number for questions about the equipment.

Allergies/Diet

Does the person have any allergies? If yes, describe.
Is the person on a specific diet? If yes, explain.
What foods should or should not be eaten?
What foods does the person particularly like?
What foods does the person not like or tolerate particularly well?
Other useful information.

Recreation Activities

List toys or objects the person like to play with (include favorite blanket, movie or video/DVD).
Where are these recreational items located (if necessary, include instructions on how to operate)?
Are there certain things that frighten the person? If yes, explain.
Does the person enjoy socializing with other people? If yes, in what ways?
What types of things does the person enjoy doing?
Does the person enjoy being outside? Where? Please list time or other restrictions.

Daily Activity Skills

Indicate how much assistance is required and special equipment needed in each area:

Eating: Is the person right or left-handed?

Bathing preferences: Does the person prefer a bath or shower? If other, explain.

State usual frequency and time for baths and shampoo. Where are person’s toiletries kept?

Dressing: Does the person choose what to wear appropriately? Can s/he wash/iron?

Toileting: Is person toilet trained? Does the person need reminders? What kind and how much assistance is needed? Does the person need help with hand washing or drying?

Grooming: shaving, hair and teeth care.

Bedtime routine: Does the person like to read or be read to? Prefer to sleep with lights on?

Communication skills: How should a caregiver communicate best with the person?

Ambulation: How does the person usually get around? Does the person need assistance?

Other useful information.

Daily Activities List. Please indicate how a typical day is spent.

Read more about respite services and how a respite program or services may help reduce or eliminate stress on familes.

Respite Care Resources




National Family Caregivers Association
(800) 896-3650
www.thefamilycaregiver.org

Child Care Resources

Child Care Aware
(800) 424-2246 (English/Spanish)
www.childcareaware.org

National Child Care Information Center
(800) 616-2242 (V; English/Spanish)
(800) 516-2242 (TTY)
http://nccic.org/

National Resource Center for Health and Safety in Child Care
(800) 598-5437
http://nrc.uchsc.edu/



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