Managing the varied symptoms of MS and maximizing independence are realistic goals which may require some adjustments to your daily routine and environment. Those adjustments may include things such as modifying your home to improve accessibility, hiring people to help you manage some of the tasks that are no longer easy for you or your loved ones to do, or moving to a home that can meet your needs, including residential care facilities.
Home care can be provided in many different forms, such as a hired person coming in for a few hours a week to help with some simple chores, to more extensive support and care provided for several hours a day. There are two types of resources noted in the Home Care & Housing category. Chore & Personal Care resources provide non-medical home care services. Respite & Home Care resources provide skilled medical services (e.g., administering medications and changing IV’s), plus nonmedical services.
What level of help in the home do you need?
- Medical (bowel and bladder management, range-of-motion exercises, occupational therapy)
- Personal care (bathing, dressing, shaving, toileting, transferring, hair care, meal preparation, wheelchair and scooter maintenance, transportation)
- Homemaking (shopping, errands, house cleaning, laundry, household paperwork and bill paying)
- Companionship (conversation, safety issues, entertainment)
When considering your home care options, think about your needs and what is important to you:
- Do you need help with simple chores?
- Do you need more support with your personal care?
- How many hours of support do you need?
- What days or times do you need the most support?
Questions to ask of home care services:
- Does it work with your insurance company, with Medicare, with Medicaid?
- What services does it provide? What needs cannot be met?
- Will the services be provided by the same person each day?
- Does the agency supply references for the professionals it sends?
- Are these professionals bonded?
- What are the fees? Is there a sliding scale? Do they charge for travel time? Is there a minimum number of hours per visit?
- How do the fees compare with those of other agencies?
- Is there a backup system for emergencies, holidays, or sick days?
- How long has it been in business?
- Is it licensed and accredited by appropriate governmental agencies?
Adult Day Services
Adult day services provide activities, health monitoring, socialization, and assistance with daily activities in a supportive, professionally staffed, community-based setting. Adult day services also benefit family caregivers by enabling them to remain in the workforce or receive needed respite and by providing them with direct services (e.g., educational programs, support groups).
Questions to ask when visiting an Adult Day Center:
- Is the center licensed, certified or accredited?
- What assistance is provided if needed, e.g., eating, toileting, transfers, dispensing medication?
- Is specialized care provided for conditions such as multiple sclerosis?
- What types of activities are provided?
- What is the staff/ participant ratio? What kind of training does staff receive?
- What is the fee—hourly, daily or monthly charge? Other charges—meals, snacks, transportation, outings, ancillary services?
Residential Care Facilities
Assisted living bridges the gap between living independently and living in a nursing home. It typically offers a combination of housing, meals, supportive services and health care. Assisted living is not regulated by the federal government and its definitions vary from state to state.
The following questions should be considered when exploring assisted living options:
- Can the person with MS maintain a fairly high level of independence? Can they manage dressing, grooming, feeding and toileting relatively independently?
- Will the person with MS require on-going medical supervision and oversight? Is there 24-hour nursing staff on site?
- Is the person with MS capable of self-management and self-direction of care?
- Is assisted living a regulated industry in your state? What facilities are licensed?
- What regulations are in place in the state regarding admission criteria for assisted living? Can all these criteria be met? For example, many states require that residents be able to transfer independently.
- How accessible is the facility if wheeled mobility is used?
- Is there a non-elderly population in the facility, or a desire to individualize programming for a younger resident?
- Is there a willingness for staff to be trained in MS and its implications?
- Are there specific discharge criteria that could necessitate having to move out of the facility if functioning declined?
- Almost 95% of assisted living is accessed on a private pay basis. Is the family able to pay the monthly fee that could range from $1800-$4500? What is covered by that fee? What are defined as additional services for which additional fees will be charged? If the cost of assisted living is prohibitive, does the state have a Medicaid waiver program to pay for assisted living? What are the eligibility criteria?
Nursing homes (also called skilled nursing facilities and long-term care facilities) provide around-the-clock care and long-term medical treatment. Most nursing homes have services and staff to address issues such as nutrition, care planning, recreation, spirituality and medical care. Nursing homes have different staff-to-resident ratios and their staff members have various levels of experience and training. Nursing homes are usually licensed by the state and regulated by the federal government.
The following issues should be addressed in evaluating skilled nursing facilities:
- Is the facility’s state license up to date? What is their record of complaints and deficiencies?
- What does the “Nursing Home Compare” section of the Centers for Medicare and Medicaid Services website www.medicare.gov/nursinghomecompare say about the facility in terms of number of residents, staff-resident ratios, inspection results, and survey data?
- Does the facility accept Medicaid? Who will clarify eligibility criteria? If paying privately, what financial resources will be available? Who will pay the monthly fee? Will there be additional costs?
- Are there younger residents in the facility? Do any of them have MS or other neuro-degenerative diseases? How much experience has the facility had with MS? Are they open to having staff receive special training in this area?
- How elderly-focused are the activities? Is there interest in incorporating activities appealing to a younger population in terms of music, community outings, intellectually stimulating games and discussion, computer access, etc.? What particular interests and activities does the person with MS most want to preserve?
- How handicapped accessible is the facility? Do they have ramps, handrails, accessible bathrooms, lifts? Is the importance of wheeled mobility appreciated? Is there storage for equipment available? Do they have arrangements with vendors who can supply and repair durable medical equipment?
- What health care professionals are on staff - physical therapists, occupational therapists, social workers, etc.?
- What preventive care is available such as immunizations, cancer screenings, dental care, eye care, foot care, etc.?
- How are direct care staff assigned? Do they rotate throughout the facility, or work on specific units?
- Is there individual climate control for residents’ rooms?
- If considering an age-restricted facility (one that may accept only adults ages 55+, for example), be sure to inquire if there are any exceptions to this guideline. For instance, some facilities who have 80% of its units occupied by adults ages 55 or older may have residents in the remaining 20% of units as young as age 45. Inquire with the intake dept of the facility for details about any age restrictions.