Can Assisted Living Care for Someone With ALS or MS in California?

The National Institute of Neurological Disorders and Stroke (NINDS) describes amyotrophic lateral sclerosis, or ALS, as a neurological disorder that affects motor neurons, the nerve cells that control voluntary muscle movement and breathing. It is progressive, meaning symptoms get worse over time. NINDS says people with ALS eventually become unable to stand or walk, get in or out of bed alone, or use their hands and arms, while they usually remain able to reason, remember and understand.

Multiple sclerosis, or MS, is described by NINDS as a chronic neurological disorder in which the immune system mistakenly attacks healthy cells. It affects people differently. A small number have mild symptoms with little disability, others have worsening symptoms and increased disability over time, and most have short periods of symptoms followed by long stretches without noticeable ones.

They are different illnesses. They share a page because families ask the same thing about both: what happens in a care home as physical needs grow. Questions about treatment or what to expect belong with the neurologist.

Assisted living communities and board and care homes, licensed in California as residential care facilities for the elderly (RCFEs), are non-medical settings meant mainly for people 60 and older. Age is not an absolute bar. Title 22, section 87455, lets a home accept people under 60 whose needs are compatible with the other residents', if they require the same amount of care and supervision as the others do. NINDS notes that MS symptoms usually begin between ages 20 and 40. Our guide to care options for adults under 60 covers the alternatives.

Neither ALS nor MS appears on the restricted list in section 87612 or the prohibited list in section 87615. Specific needs do, and our guide to health conditions assisted living can accept explains both lists. No home may admit or keep a person who requires 24-hour skilled nursing care, and no home is required to accept a particular person.

Title 22 separates what a home's own staff may do from tasks that need an appropriately skilled professional, meaning a licensed person such as a nurse or a physical, occupational or respiratory therapist. Need by need, the rules are:

Breathing support is the least clear area. NINDS says people with ALS may use noninvasive ventilation through a mask and may later need a mechanical ventilator. Title 22 names oxygen and the intermittent positive pressure breathing machine as restricted, and tracheotomies as prohibited, but does not mention other breathing equipment. Ask the home what it has cared for before, and whether it has checked with its licensing office.

There is no number of months in the rules. There are thresholds. NINDS says that as ALS progresses, a feeding tube can reduce the risk of choking and pneumonia when a person can no longer eat with help, and that people eventually cannot get out of bed or use their hands and arms. Each of those points meets a line in Title 22: the bedridden fire clearance, the prohibition on feeding tubes, and the prohibition on depending on others for all daily activities.

Two routes can keep a resident in place past those lines. Under section 87616, a home may ask the Department of Social Services for a written exception, with current medical reports and its plan for meeting the person's needs. The home applies, and the department decides. The second route is hospice: a home that holds a hospice care waiver does not need a separate exception for a terminally ill resident whose hospice care plan addresses the condition.

Ask each home what it will do at each threshold, whether it holds a hospice waiver, and whether it has ever asked for an exception. For tube feeding in particular, see feeding tubes and swallowing problems.

MS is less predictable from month to month. NINDS describes attacks, also called relapses, followed by full or partial recovery, and says many people find their symptoms are worse when they have a fever, are exposed to heat, or have a common infection. It also notes that people with MS often use a wheelchair, especially with advanced disease.

For a care home, a relapse that changes the help a person needs is what the regulations call a significant change in condition. The home must update its appraisal, bring the change to the attention of the resident's medical professional, and adjust the care it gives. If your relative's needs go up and down, ask how the home prices care when needs rise and whether the price comes back down afterward.

Therapy can come to the resident. NINDS says physical and occupational therapy can help people with MS with walking and with saving energy. See therapy and home health in assisted living for how therapists and nurses visit a care home, and wheelchairs and transfers for lifts and two-person transfers.

Bring a current list of what your relative can and cannot do, and ask:

• Which rooms are cleared for nonambulatory residents, and is the home cleared for bedridden residents?
• Have you cared for a resident with ALS or MS before? What happened when their needs increased?
• Do you hold a hospice care waiver?
• Who are your other residents? Is anyone close to my relative's age, and do most have dementia?
• How do staff communicate with a resident who uses a speech device or cannot speak clearly?
• At what point would you tell us you can no longer meet these needs, and how much notice would we get?

Hamssa Benrekia is a senior living placement specialist in Torrance with a background in hospice, palliative care and home health. She can ask licensed homes in the South Bay and Harbor area the threshold questions before you tour, and go on the tours with you. That search can include small board and care homes. The home, the doctor and the state decide what a home may accept. To talk it through, contact Hamssa, or start with the California Assisted Living Placement Guide.