In This section of Transition Services looks at the various residential care facilities available when your child ages out. It will also provide information on how to plan, when to plan, and who to contact to ensure placement at an appropriate time.
There may be times after a student with disabilities leaves secondary education when parents will have to explore housing alternatives other than the family home. A variety of motivations for this decision may include the following:
The physical, medical, economic, and psychological resources of some families to care for the needs of a family member with disabilities may diminish over time.
The need to foster independence and autonomy may dictate the desirability of separate housing.
Parents who are confronted with the need for residential options may face a confusing and sometimes overwhelming fund of information. A large part of this confusion is attributable to the variety of terms used to describe these available programs, i.e, group homes or community residences.
Three major factors will influence the types of service available to persons with disabilities.
First, some residential services are available only to those who are eligible for medical assistance and county mental retardation services.
Second, service options are based on the level of care needed. The family subsidy program aids families in keeping children with disabilities at home rather than placing them in a residential facility. For those who need some supervision and training to live independently but do not need care 24 hours a day, semi-independent Living Services (SILLS) may be an option. Community-based waivered services or placement in an intermediate care facility (group home) are options for persons who need 24-hour supervision.
The third factor influencing the type of residential services available is the funding level for the programs. Unfortunately, the need for residential facilities far outweighs the availability of these resources. Some of this is due to a lack of funding, but there has also been tremendous resistance on the part of local communities to have such residences in their midst (not in my backyard). Historically, costly and lengthy legal fights have addressed this issue.
Therefore, those working with the student with disabilities must begin addressing these issues years before this need arises. Some parents report waiting five to six, or more, years for a space to open up at a facility. One of the pathways, in addition to putting their names on a list, is to get parents and their children involved in the activities of a local service provider. This will enable the family to develop an ongoing relationship with that service provider, which will be helpful when space in a facility becomes available. When parents begin their search for residential options, their goal should be to identify as many as possible. Knowing where to look will enable them to find contacts who can answer their questions.
In this section we will try to reduce the confusion caused by the different labels. In trying to unravel the many options, it is important to be as open as possible, as two group homes may be vastly different because they serve people with different levels of disability.
Raising a child with disability or chronic illness poses other challenges. As families meet these challenges, time off can become a necessity for the caretakers. In recent years, the growth of respite care services—short-term specialized childcare—has begun to provide families with some temporary relief.
The birth of a child with a disability or chronic illness, or the discovery that a child has a disability, has profound effects on a family. When parents learn that their child has a disability or special health care need, they begin a process of continuous, lifelong adjustment. Adjustment is characterized by periods of stress, and during this time, family members’ individual feelings of loss can be overwhelming, shutting out almost all other feelings. Coping with uncertainty about the child’s development may interfere with the parents’ ability to provide support to each other and to other family members. Even when the diagnosis is clear, there are still many uncertainties—health, programmatic, and financial.
Social and community support can reduce the stress experienced by families. The support of relatives, friends, service providers, and the community can help families ease the adjustment period.
After reading this section, you should understand the following:
- Resources to Consider
- Centers for Independent Living (CIL)
- Residential Services
- Adult Foster Care
- Boarding Homes
- Family Subsidy Program
- Free-Standing Weekend Respite
- Group Homes
- Semi-Independent Living Arrangements (SIL)
- Home Care Attendants or Personal Assistant Services
- Supervised Living Arrangements
- Intermediate Care Facility (ICF/MR)
- Supportive Living Units (SLU)
- Waivered Services
- Evaluating Residential Programs
- Making a Residence Accessible
- Housing Subsidies
- Section 8 Housing
- Section 202 Housing
- Overview of Respite Care
- Benefits of Respite Care
- Respite Care Suggestions for Parents
- How to Tell if a Family could Benefit from Respite Care
- Federal and State Agencies for Help with Respite Care
- State and Local Disability or Support Groups
- What Parents Need to Know when Seeking Respite Care Services in their Community
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