Children With Disabilities: Understanding Sibling Issues

Suggestions for Families

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National Information Center
for Children and Youth with Disabilities

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When planning for the future of the sibling with a disability, you should consider such things as mobility, social and communication skills, education, and the individual's own ideas about where to live and work. Even after careful planning and the appointment of a guardian or co-guardians, plans should be made for emergencies. A file should be kept in a safe place, known to all family members. The following ideas should be addressed when making future plans and the information should be included in this accessible file:

1. Develop financial plans for future care. If the family is considering establishing a trust for the family member with the disability, it should consider the incomes of the children in the family, including the sibling with a disability. Make a will only with an attorney experienced in devising wills for those who have an heir with a disability. Inheritances must be treated with caution. It is especially important to investigate the continued eligibility for certain social services if assets from an estate, pension, or life insurance are left to the child with a disability.
   
   
2. Know your state's laws regarding guardianship and independence. Do not assume that you as parents will automatically remain your child's guardian when he or she reaches the age of majority in your state. Establish whether the sibling with a disability requires no, partial, or full guardianship. This information should be in writing, and, if possible, make contingency plans in case the first-choice guardian is unable to assume that role. Be aware of the consequences in your state of not having a guardian appointed.
   
   
3. Nondisabled siblings should know where to access the needed educational, vocational, and medical records of the disabled sibling, and be ready to anticipate his or her changing future needs.
   
   
4. Families should consider the future health of the sibling with a disability with respect to needed services and care. Parents should document where he or she can receive medical care and the financial resources and arrangements necessary for this care.
   
   
5. Families should gain an understanding of the legal and eligibility requirements of programs available to the family member with a disability. Investigate resources through government programs, such as Supplemental Security Income (SSI), Vocational Rehabilitation, Independent Living Centers, employment services, parent and disability groups.
   
   
6. Families should discover the types of community resources available. The range of services and resources varies considerably according to place of residence. Keep abreast of any changes in the availability of these services. Consider the sibling's need for long-term care, as well as for employment and companionship.
   
   
7. Be aware that, as families grow and develop, the members within it change. Living with and caring for a child with a disability is different from living with and caring for an adult with a disability. Family members should continually ask themselves the following questions:
   
   
   • What are the needs of the sibling with a disability?
     
     
   • How will these needs change?
     
     
   • What can be expected from local support groups in the community?
     
     
   • What is and will be my level of involvement?
     
     
   • Is the involvement financially, emotionally and psychologically realistic for me?
     
     
   • How will the responsibility be shared with other family members?
     
     
   • Are my career plans compatible with my responsibilities for my brother or sister with a disability?
     
     
   • Will my future spouse accept my brother or sister?
     
     

The care of a sibling with a disability or chronic illness is, in large part, a family affair and a responsibility that should be shared as evenly as possible. By planning effectively for the future, parents can help ease the responsibility and the feelings of stress that uncertainty about the future can bring.

Suggestions to Parents

Parents set the tone for sibling interactions and attitudes by example and by direct communications. In any family, children should be treated fairly and valued as individuals, praised as well as disciplined, and each child should have special times with parents. Thus, parents should periodically assess the home situation. Although important goals for a child with special needs are to develop feelings of self-worth and self-trust, to become as independent as possible, to develop trust in others, and to develop to the fullest of his or her abilities, these goals are also important to nondisabled siblings.

To every extent possible, parents should require their children with disabilities to do as much as possible for themselves. Families should provide every opportunity for a normal family life by doing things together, such as cleaning the house or yard; or going on family outings to the movies, the playground, museums, or restaurants. Always, the child with the disability should be allowed to participate as much as possible in family chores, and should have specific chores assigned as do the other children.

Caregiving responsibilities for the child with a disability or chronic illness should be shared by all family members. It is especially important that the burden for caregiving does not fall onto the shoulders of an older sibling. If there is an older sister, there is a tendency in some families to give her the primary responsibility, or an excessive amount of it. Today, however, more communities are providing resources to ease the family's caregiving burdens. Examples include recreation activities, respite care, and parent support groups.

Powell and Ogle (1985) present several strategies suggested by nondisabled siblings themselves for parents to consider in their interactions with their nondisabled children. These siblings suggest that parents should:

• Be open and honest.
  
  
• Limit the caregiving responsibilities of siblings.
  
  
• Use respite care and other supportive services.
  
  
• Accept the disability.
  
  
• Schedule special time with the nondisabled sibling.
  
  
• Let siblings settle their own differences.
  
  
• Welcome other children and friends into the home.
  
  
• Praise all siblings.
  
  
• Recognize that they are the most important, most powerful teachers of their children.
  
  
• Listen to siblings.
  
  
• Involve all siblings in family events and decisions.
  
  
• Require the disabled child to do as much for himself or herself as possible.
  
  
• Recognize each child's unique qualities and family contribution.
  
  
• Recognize special stress times for siblings and plan to minimize negative effects.
  
  
• Use professionals when indicated to help siblings.
  
  
• Teach siblings to interact.
  
  
• Provide opportunities for a normal family life and normal family activities.
  
  
• Join siblingrelated organizations.
  
  

Children with special needs, disabilities, or chronic illness may often need more help and require more attention and planning from their parents and others in order to achieve their maximum independence. Brothers and sisters can give parents some of the extra help and support they need; the special relationship of brothers and sisters, disabled and nondisabled, is often lifelong. This special and unique bond among siblings can foster and encourage the positive growth of the entire family.