Increased Need for Services and Support

Key Points

• For people with and without Down syndrome, our needs may change as we age and/or develop health issues.

• The change in the needs may be temporary or permanent.

• There are a variety of ways to provide for the changing needs as well as settings in which those services can be provided.

As people age, their health needs and the support they need in daily life can change. Additionally, the available assistance in their home may change. Sometimes the needs of the individual exceed the assistance available in their home. This is true for people with Down syndrome as well as people without Down syndrome. The need for increased services may be temporary or permanent. Decisions regarding getting additional assistance must be made.

What are some of the reasons why a change in the level of care may be needed?

For individuals with Down syndrome served at our center, common reasons that temporary or permanent increased assistance is needed include: 

Acute injury, illness, hospitalization, or surgery

Progression of health problems

With the progression of some health problems, long-term (or permanent) services may be needed. Services may include oversight and assistance with daily hygiene and dressing, assistance to optimize the individual’s safety, activities if the individual isn’t able to participate in their usual activities, and others.

Where can these services be provided?

The individual's home

Whether temporary or long-term, many services can be provided in the home. Visiting nursing services, therapies, wound care, intravenous medications, and more can be provided in the home.

Residential home

Some of the individuals we serve who live in a residential home can get the additional, temporary services at their home (residential facility). Sometimes agencies can provide these temporary, additional services either in the individual’s home or in another one of the agency’s residences.

Licensing issues restrict some residential homes from providing certain treatments. For example, a residential home often cannot provide home intravenous medications even if a visiting nurse could come to the house to administer it.

For long-term needs, many agencies have homes that provide various levels of service and a move within the agency may be possible. For example, one level of care is called Intermediate Care Facility-Developmental Disability (ICF/IID). Homes with this designation have more services and can provide care for individuals with more complex needs. In some situations, a temporary or permanent move to an ICF-IID can address the changing needs of the individual.

Nursing home

Nursing homes can provide a wide variety of services. Available services vary from nursing home to nursing home. Depending on the needs of the person, the stay in the nursing home may be temporary or long-term.

Who pays for the care?

Temporary care in some cases is covered by Medicare. Depending on the situation, coverage by Medicaid, long-term care insurance, or health insurance may also be possible. The insurance will typically pay for both specialty services (e.g., skilled nursing care) as well as daily care needs (bathing, meal preparation, etc.) during that time. There are typically limits to the number of days that Medicare and the other options will pay for these services.

Long-term “custodial” care is not covered by Medicare or health insurances. Additional information is available on the Medicare website. Long-term (or custodial) care is care that provides assistance with day-to-day needs such as bathing, meal preparation, dressing, etc. In the individual’s home, long-term care often requires private pay (paying from one’s own funds) or long-term care insurance. Long-term care in a nursing home typically is paid for by the individual or family, through Medicaid, or through long-term care insurance.

Can a person with Down syndrome live in a nursing home?

In the past, some young people with Down syndrome were placed in nursing homes because there were no other places for them to live. The services provided and the placement were inappropriate for the person’s needs. In Illinois, in 1987, a class action lawsuit was filed on behalf of these individuals who didn't need nursing home care and who were inappropriately placed. The outcome was the opportunity to live in more suitable residential facilities. 

Subsequently, the diagnosis of Down syndrome or intellectual disability is not an accepted reason to live in a nursing home in Illinois. To live in a nursing home in Illinois, a person with Down syndrome or other intellectual disability must have another diagnosis. In our experience, for short-term stays, the diagnosis for the stay is often something like need for PT and OT for a fractured hip, need for antibiotics for an infection, wound care for a skin wound, etc. For long-term stays, the most common diagnosis in our practice is Alzheimer’s disease.

Should the individual stay in their home?

Staying in one’s own home is preferred by many people, with or without Down syndrome. As the individual’s needs change or the ability to support the individual changes, what additional services can be provided in the home must be determined. Many factors need to be considered:

• Is family (or staff in a residential home) able to provide for the changing needs?

• Will regulations for the residential home allow for provision of additional support and services?

• Has the ability of the family to support the individual declined due to aging or declining health of parents, lack of availability of other family, or death of a family member?

• Is the home environment appropriate for the individual's changing needs?

  • The number of stories in the home, stairs, space to accommodate assistive devices, etc. will all need to be considered. 

• Will the available funding pay for an increase in home service?

• Do the needs or activities of the others who live in the home conflict with the changing needs of the individual?

  • For example, sometimes in residential homes, when a resident's need for services and support changes because of declining skills, the ability of the resident to leave the house may also decline. This can result in a reduction of services and opportunities for the other residents. 

• What is the philosophy of the residential facility?

  • For residential homes, sometimes it comes down to a philosophical approach. Some agencies have decided to care for the individuals with intellectual disabilities throughout their lives. They adjust their services based on the individual's needs and the changing health issues. Others have clearly defined their mission as care for and habilitation of people with intellectual disabilities and don't see themselves as having the resources or expertise to care for these other issues that arise (for example, advanced Alzheimer's disease).

• Is the setting overwhelming for the individual?

  • When individuals slow down as they age or develop health changes, sometimes it is stressful for them to "keep up" with the pace of the activity of the others i the home. If the level of activity cannot be adjusted in a family home or residential home, sometimes the setting may be overwhelming for the individual. 

• How are other people in the home affected?

  • In some residential home settings, the others in the home may find changes in the individual too challenging to manage. For example, sometimes the declining skills of an individual, their inability to participate in activities, and other changes may be very stressful for the others in the home. The others in the home may not have the cognitive and emotional resources to manage. On the other hand, sometimes the others truly "rise to the occasion," their best helping skills are displayed, and it has a positive effect on them.

Making a realistic assessment of the individual's needs and answering the questions above can help to determine the best setting for the individual.

Should the individual move?

This can be a challenging decision and needs to be answered uniquely for everyone. What are some of the issues?

Familiarity

The familiarity of the present setting can be comforting and less confusing than moving. Staying in the present setting may be positive as long as the setting remains good for the person. If the lack of resources, the busy environment, and other issues are causing the individual stress and/or contributing to further decline, a move at that time may be indicated (if changes cannot be made to the present setting).

Moving proactively

In the case of increased long-term needs, even if the present setting is still “good for the person”, a move at this time before the home setting is no longer beneficial for the individual may be indicated. If an individual moves earlier, they may avoid living through a period, while waiting for an appropriate place to move, when the present setting cannot manage their needs. This time period may have a negative impact on the individual. 

Coping with moving

Another issue is the ability of the person to manage or cope with a move. For example, in individuals with Alzheimer’s disease, there may be a desire to have the person remain in their present home as long as possible because a move can be confusing. However, a move that is “too late” can be a significant problem because, at the future time, the person may have fewer cognitive and emotional abilities to adjust to the move and, ultimately, they may not be able to adjust at all.

Aging family members

Additionally, sometimes a move is considered at least partially due to the aging or decline of the person’s parents. Particularly if the person will no longer live with their parents, a move sooner may be advantageous because it allows the parents to be there to support the individual through the move. It may also avoid a sudden emergency move if the parents are abruptly not able to assist with care in the home. Two stressful events, the loss of a parent (or the loss of the parent’s ability to be with the individual) and a move at the same time can very challenging.

Additional resources are available in the Aging and Alzheimer’s disease and dementia sections of our Resource Library.