Youth Nursing Homes for Children With Disabilities

For parents or guardians of a profoundly disabled child, it may seem like there is no other option than to place the child in a youth nursing home. Unfortunately, nursing homes (or care centers as they are often now referred to) that are specifically designed for children and young adults are few and far between. The more likely scenario is that a child or young adult is placed in an adult nursing home to get the care they need. What is becoming increasingly clear though is that an adult nursing home is no place for a child of any age, regardless of the disability. Before you get too discouraged, let's talk about some of the better options which are available.

Placement in a Nursing Home or Care Center

Why would a loving parent or guardian place a child in a nursing home? Often they have no choice. A child may be so disabled that the parent or guardian needs the assistance of another person, or the child needs 24-hour care. A parent or guardian, especially if they are without other family support, may find it financially and physically difficult or even impossible to constantly care for a child. Some children need medications that need to be administered intravenously and an untrained person is unable to provide this type of care. Other times, the care needed for a profoundly disabled child is seriously compromising an adult's ability to care for other children in the home. In these cases, a nursing home may seem like the only option available.

Problems With Traditional Nursing Homes or Care Centers

A nursing home can care for a disabled child or young adult, but there are often many needs that are not met when a child is placed in a nursing home for the elderly. A nursing home for the aged and infirm is run with the care of end-of-life patients in mind. A nursing home for the elderly rarely focuses on the social needs of a young person, nor their education. Often times the only attention a child receives is the delivery of food, medication, and attention to basic hygiene needs. The rest of the time they may be left alone.

For children who are aware of their surroundings, living in a nursing home can be both frustrating and depressing. They have no one to talk to, they miss their friends and family, and especially miss the affection and attention they had at home.

Youth Nursing Homes or Care Centers

A youth nursing home is run with a young person’s needs in mind. A child is able to interact with other people their own age, is able to have visitors, and may even have visitors well into the evening. Attention is given to social interaction, with planned field trips on a regular basis. Depending upon a child’s disability, special education classes are available, or classes that can teach a job skill if the child is able. In general, more time is spent nurturing a child, physically, spiritually, and emotionally, than would ever be available in an eldercare facility.

If you do decide to place a child in a youth nursing home, you may have very mixed emotions. Take a moment to read about how families can cope with the sadness, guilt, and grief of care-center placement.

Options for Parents or Guardians

There is a growing movement, both in the United States and abroad, to offer more care options, other than a traditional nursing home or even a children’s nursing home, to parents and guardians of disabled children. Youth nursing homes are but one option. Another outside-of-the-home option is daycare. Daycare options for those with disabilities are also sometimes few and far between. A good place to start looking for options is to contact local children's hospitals.

In-Home Nursing Care or Assistance

Other options include the availability of funding and programs which provide in-home care to disabled children. For example, the Children’s Freedom Initiative in Georgia has advocates that assist parents and guardians in finding the help they need so that they can care for disabled children in their own homes. The mission of the organization is to advocate for and protect disabled individuals. It is hoped that other states will follow their example and reduce the need for children to be placed in eldercare facilities.

Finding Funding for In-Home Care or a Children's Care Center

While most states don't have a program in place like Georgia's, there are many options for funding either in-home care or a youth care center for a child. Funding options for parents or guardians can be explored through the following state and government agencies, as well as charitable organizations in the United States. Some options which you may wish to explore include:

• Department of Health and Human Services
• Early Intervention Program
• Office of Mental Retardation and Developmental Disabilities
• Children’s Aid Society (New York)

Other Charitable Funding Programs

The following are just some of the many charitable organizations that offer funding for the care of disabled children:

• Administration for Children and Families
• Disabled Children's Relief Fund
• Easter Seals
• First Hand Foundation
• Kaitlin Marie Bell Foundation
• Midwest Special Needs Trust
• The Disabled Children’s Fund
• The M.O.R.G.A.N. Project
• UnitedHealthcare Children’s Foundation, Inc.

This is just a sample of some of the charitable organizations that are available. Some organizations provide grants and resources for certain regions of the country, whereas others may provide help nationwide.

Childcare Options for Children With Disabilities

If you've been considering care in a nursing home for a disabled child, you may feel like you are at the end of your rope. You may feel physically and emotionally unable to care for the child any longer, or instead, you may feel like caring for a disabled child is hurting or placing other children in your care at risk. Just to get to this point is a difficult step.

However, sometimes parents or guardians don't need placement or extended in-home help to take care of their children. There are several options available for this as well. If you have friends or family available to help, you may wish to ask them to help you explore the options. It can take a lot of effort and be exhausting to do so, but in the long run, most parents and guardians are relieved that they invested the time to reach out and find the options available. On the other side of the picture, there are many organizations that long to help parents or guardians just like you, but don't know where to begin finding you.

It may take some time. Until we have better and clearer options in place, finding what you need may be a long course of hit or miss and three-steps-forward-two-steps-back. Think about the groups you belong to. If you are active in a religious organization or church, there may be people available to help you do the digging that is necessary. It's up to you, however, to ask the questions and begin the process.

While it may take time, many parents and guardians of profoundly disabled children have found the funding for care that has made a difference for the entire family.