Community Resources
A variety of resources are available to help children with special needs in the community. These resources can provide a broad spectrum of support, from supporting a short-term recovery to providing assistance for those with lifelong disabilities. Physicans fill an important role when they present their patients, both the children and their parents, with a range of resources available to them, and think with them about which resources would help them to manage their special needs in the context of their individual lifestyles. While specific resources will vary from one community to the next, most communities will offer some resources in the categories described below.
Sources of Information and Referral
Information about resources for children with special health care needs and their families are available on-line:
- Parent Training and Information Centers (PTI): PTIs provide training and information to parents to assist with children’s educational plans. Each state has at least one PTI. PTIs also help resolve problems between families and schools or other agencies, and connect children with disabilities to community resources that address their needs.
- Pacer provides links to Parent Centers and resources organized by region.
- A special PTI is available for military families
- Title V Toll-free Numbers:
Title V of the Social Security Act establishes Public Health services
for children with disabilities. Each state provides a toll-free number
to help families find and access these services. The Maternal and Child
Health Bureau supplies a directory of these toll-free numbers.
- National 2-1-1
provides access to information and referrals for individuals and
families by dialing 2-1-1 toll-free. This service is available to about
81% of the United States as of March 2010. National 2-1-1 provides
information about a wide array of resources, such as food banks,
shelters, rent and utility assistance, health insurance, health and
mental health services, counseling, crisis intervention, drug and
alcohol intervention and rehabilitation, employment assistance,
transportation, child care, summer camps and recreation programs,
mentoring, and tutoring.
- Family Village
provides information about a wide range of resources for individuals
with special needs and their families, including disability-specific
organizations and support groups.
- Military OneSource
provides online information for active duty military members and their
families, with 24-hour a day phone consultation and individualized
referral to community resources.
- Early Intervention Services: Services for
children ages birth to three with developmental delays are available
under the Individuals with Disabilities Education Act (IDEA) in all U.S. states and territories and at U. S. Department of Defense sites with
families overseas. An Individualized Family Service Plan (IFSP),
tailored to the needs of the child and family, guides the provision of
early intervention services. The plan may include developmental
therapies, physical therapy, occupational therapy, speech and language
therapy, special education and family support. To locate early
intervention services in each state, refer to
www.nectac.org/contact/ptccoord.asp for more information.
- Special Education Services: Preschool
special education (for children ages 3-5) and special education for
children in school (ages 5-21) are also available under IDEA. Each child
with a disability is entitled to a free, appropriate, public education
provided in the least restrictive environment (i.e., in a setting that
includes as much time as possible with the child’s typically-developing
peers, delivered in a way that addresses the child’s special needs). Child Find,
also part of IDEA, facilitates, “the earliest possible identification
of young children and their families who may benefit from early
intervention or education services.” An Individualized Education Plan
(IEP) delineates the specific accommodations and services that a child
will receive to address their special needs in an educational program
for more information.
- Mental Health: Many families are challenged by mental health issues. Nationally, there is a paucity of mental health resources, which is even worse in some areas. Thus, resources can be difficult to locate. This website serves as a good starting point to locate mental health services.
- Therapy and Rehabilitation: Physical care
and short or long term rehabilitation services are often required for
children’s immediate needs concerning disabilities or illnesses.
Programs include those that are disability-specific, such as those that
provide services for children with head injury or spinal cord injury.
All-inclusive programs provide a broader range of services such as
speech and language therapy, physical therapy, occupational therapy, or
vocational rehabilitation. The National Rehabilitation Information Center
can help locate resources on rehabilitation services, with internet
resources, research, organizations and agencies concerning a variety of
disabilities and diseases.
- Nursing Services: Children may need home
nursing during recovery after a serious acute illness or surgery. Some
children with complex, chronic needs may require nursing services in
order to live comfortably in the community. Nursing services may be paid
as part of a child’s health care benefit or through a Medicaid waiver
program in a particular state. Home health agencies and Visiting Nurses
Associations serve as two potential sources of home nursing. Discharge
planners, case managers, care coordinators or social workers usually
know local sources of home nursing, as well as how to help families find
sources of payment for this care.
- Respite Care: Respite care provides an
opportunity for parents and other full-time caregivers to have some time
to rest or attend to responsibilities in addition to the care of their
children. The ARC is a
national, non-profit organization that provides care, information,
resources and advocacy for individuals with mental retardation and
related developmental disabilities and their families. Many communities
have other sources of respite care, which you could find through the
sources of information and referral described above.
- Psychosocial Services: Many children with
special needs and their families will also want or require resources to
help them cope with their diagnoses and live their day-to-day lives as
normally as possible. Services may include
- Professional counselors
- Behavior specialists, providing one-to-one behavioral support and intervention in a child’s setting
- Family-to-family support, to network with other families with similar situations.
- Alcohol/substance abuse services (such as Narcotics Anonymous, or Al-Anon/Alateen)
- Advocates who will listen and help the people find resources in communities.
- Family Voices http://www.familyvoices.org is a nationwide network of people who advocate for individuals with special needs.
See the Helping Families Cope Tool for more information about psychosocial services. - The AAP also has a list of many other online resources. Additional resources are listed by state.
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