Companion Resources
Living-Residential Options

Children are expected to gradually gain independence from their parents. This happens in two ways:

1. Gaining self-care skills in childhood, including feeding, dressing, and cleaning.
2. Moving out of the parental home and establishing one's own household. This generally happens in in the late teens and early 20's.

Parents of children with significant physical and/or profound mental disabilities early on face hard choices about needing to meet the physical needs of children who are unable to care for themselves.

Even when basic self-care skills are present, parents of children with almost any significant disability or chronic mental illness need to consider whether they have the skills necessary to function independently in our society. If not, parents either become caregivers themselves or need to consider living arrangements outside the family home with suitable caregivers provided.

This page explores living options, particularly for adults with disabilities and mental illness who need assistance in daily living, but also noting options for children as appropriate. These include traditional institutions, group homes, and other community living arrangements.

The issue of respite for caregivers is also considered on this page.

Some historical perspective is helpful for persons who are new as well as general information.

A collection of links to organizations with residential services will be built up over time. Feel free to send me additional links.

General information on caregiving and respite services is also included on this page. This material begins a considerable overlap between caring for an adult child and the even more common scenario of caring for a spouse or parent disabled due to aging. Hopefully, future additions to this site will treat this topic more fully.

Related pages include work and vocational options, life planning that includes financial planning and general pages on disabilities and mental illness.

For those with particular concerns about approaches that emphasize community and non-violence, check out our page with the best models and the page on Gentle Teaching.

History

History of Disabilities
A fascinating collection of materials from a National Public Radio series on disabilities. Includes some audio clips and background material not included in the radio version.

General Information

Intermediate Care Facilities For the Mentally Retarded: Meeting the Long Term Care Needs and Maximizing the Potential of Individuals with Mental Retardation and/or Developmental Disabilities
A helpful article by the American Health Care Association about ICF/MR facilities, a primary government funding tool for persons who depend on others to meet their everyday needs.

From Institutionalization To Community:
How Far Have We Come?
The past century has seen significant progress from cold sterile institutions to community living arrangements for persons with special needs. However, what has professionalization of services done in the process? Have we simply created institutions without walls. Audrey King asks probing questions in this 8-page essay from from the Journal of Leisurability

In Response to Deinstitutionalization:
Farm Communities as a Housing Alternative for Individuals with Autism
In this article from the Journal of Leisurability Margaret A. Schneider examines both the strengths and weaknesses of farm communities such as Bittersweet Farms in Ohio as an alternative to group homes for persons with autism. Historical background to this movement is helpful.

Residential Services

Bethphage

Friendship Community
Friendship Community is a ministry supporting people with developmental disabilities by responding to families and individuals seeking a Christian program. Friendship Community provides residential programs in group homes, apartments and other supported living arrangements in Lancaster and Lebanon counties in Pennsylvania. Support services include: family support groups, recreational programs, respite care, and worship.

Trinity Services Inc.
Trinity Services Inc., a nonprofit, non-sectarian organization, was founded in 1950 as the Trinity School in Joliet, Illinois, by a group of parents of children with developmental disabilities.

Caregiving

National Family Caregivers Association (NFCA)
NFCA is a grass roots organization created to educate, support, empower and speak up for the millions of Americans who care for chronically ill, aged or disabled loved ones. The site includes research, caregiving tips, news and information, and much more. Membership in the organization which includes a free caregiver welcome kit and a quarterly newsletter is available free to all family caregivers in the United States.

Caregiver.com
From the publishers of Today's Caregiver, a magazine targeted mostly to adult children taking care of their aging parents. A free weekly e-mail newsletter is attractively presented and helpful.

Family Caregiver Alliance
An information and advocacy resource center for family caregivers.

Respite

Respite is a temporary break for caregivers from the responsibilities of caregiving to rest, relax, and pursue recreational opportunities. Respite is particularly important for parents and others caring for a child (even an adult child) with special needs. Respite is also essential in situations where an adult child is caring for an aging parent.

National Respite Locator Service
The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area. The service is also useful when a family travels or must move to another state. There are also links to adult day services and camps for children with special needs.

ARCH National Respite Network and Resource Center
Part of the Chapel Hill Training-Outreach Project at the University of North Carolina, ARCH helps support service providers and families through training, technical assistance, evaluation, and research. Their goals are to reduce family stress, support family stability, prevent abuse and neglect, and minimize the need for out-of-home placements.

Respite Care: A Gift of Time
This is a 10-page article from the National Information Center for Children and Youth with Disabilities on respite care. Gives helpful background information.

The ARC's Q&A on Respite Care
A short article giving basic information on respite care with a focus on persons with developmental disabilities.

KidsCamps.com
Search engine to find camps. Includes significant sections on camps for all kinds of special needs.

Therapy/Respite Camps for Kids
Information about summer camps that focus on therapy for kids with special needs and/or respite for the kids and their families. Broken down into national categories and regional categories in the United States.