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This page was last modified on : 08/11/2010

Accessing Community Resources

Receiving information about community services is the number one wish of parents of children with chronic illnesses (see below).  Linking a patient and family to community resources can involve:

  • A specific service referral,
  • Sharing a handout of local services with recommended services circled,
  • Posting information about community resources in waiting rooms,
  • Keeping up-to-date on what's available or knowing who does.

Community Resources for Children with Special Health Care Needs


  • Children with Special Health Care Needs (CSHCN) Coordinator

    This link takes you to a guide with information on how to refer families to public health nurse CSHCN Coordinators.  The guide also includes contact information by county for each CSHCN Coordinator in Washington State.
    www.doh.wa.gov/cfh/mch/documents/coordlst.pdf adobe acrobat icon

    NOTE:  To go directly to the website of your local public health department or district, see: www.doh.wa.gov/LHJMap/LHJMap.htm

   

CSHCN Coordinators are public health nurses in local health departments who can assist families who have children with special needs from birth to age 18. CSHCN Coordinators can:

  • Help families access needed services for their child, such as medical care and other interventions.
  • Refer families to health insurance programs and information, both private insurance and the state funded Medicaid program.
  • Help families support each other through parent support organizations.
  • Help with concerns such as feeding, nutrition, growth, development and behavior.
  • Provide screening and assessment for your child.
     
  • Family Resources Coordinator (FRC)

    FRCs help families with children age 0-36 months who are concerned about their child's development get the early intervention services a child may need.  At the family's request, an FRC can help the family through screening, evaluation and assessment, the development of an Individualized Family Service Plan, receiving early intervention services and transition out of the early intervention program at age 3. More information about FRCs and early intervention services is available through the Washington State Department of Social and Health Services, Infant Toddler Early Intervention Program.    

 

National, Regional and Local information


In January of each year Exceptional Parent Magazine updates and publishes a Resource Guide, including a listing of ‘National Resources for Specific Disabilities and Conditions’.    Condition specific and general organizations are listed with mailing address, e-mail address, phone and fax numbers (many have 1-800 numbers).  A code by the agency name indicates the services they provide, such as networking and matching of families, dissemination of information brochures, journal articles, books and newsletters, national conferences, and referrals to local chapters.

The guide is free with the January issue of the magazine or it can be ordered (call 1-800-535-1910) or purchased at a bookstore for about $10.

Examples of services families may not be aware of but may find useful:

  • Recreational resources
  • Special Olympics
  • Specially-adapted toys
  • Educational supports
  • Personal assistance program
  • Summer camps
  • Assistive technology
  • Special clothing
  • Financial supports
  • Respite care

Parents’ and Physicians’ Ranking of  ‘Wish List of Support Services’
(From a Survey of 519 Families of CSHCN)

Service MDs Parents
Respite Care 1 9
Day Care  2 21
Parent support groups 3 3
Help with problem behavior 4 10
Financial information or help 5 2
After-school child care 6 20
Assistance with physical household changes 7 15
Vocational counseling 8 6
Psychological services  9 5
Homemaker services  10 22
Recreational opportunities 13 4
Info about community resources   14 1
Dental treatment   16 8
Summer camp  19 7
     
From: Community Physician’s Role in Case Management of Children with Chronic Illnesses.  Liptak GS, Revell GM.  Pediatrics. 84:465-471, 1989. 
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