Questions to ask as families explore and engage a network of services and support
These lists of questions are not intended to be all-inclusive or complete. Rather, they are meant to guide families as they anticipate decisions and seek relevant information about the appropriateness and quality of various services and programs. Each family’s specific questions will be based on the particular clinical and support needs of the person with MS and those issues and concerns most important to family members.
Meeting a person’s needs at home raises questions such as the following:
- What kind of help is required? Are we talking about companionship, home upkeep, or personal hands-on care? Obviously, the level of skill needed for each of these services varies, and if one is purchasing any of these services from community agencies, the cost will vary as well. If a person only needs someone to run errands and vacuum the house, you do not need to be paying for a Certified Nurses Aide.
- When is the help needed? Is it concentrated in the morning, in the evening, or throughout the day? Are there safety concerns that would require someone to be available at all times?
- How much help can family members and friends provide? How reliable can they be? What other demands are they dealing with in their lives? Can they do the tasks that are needed? Who will coordinate the schedule and the care? Can neighbors help? Are there church or fraternal organization volunteers that can help?
- If the decision is made to seek services from community agencies such as health care agencies, adult day programs, transportation services, or meals-on-wheels, who will make the contacts? Who will look into eligibility for subsidized services? If the family must pay, how will payment be arranged? Who will pay for what?
- If the decision is made to hire help privately, who will interview applicants? Where will the interviews take place? Who will check references? How will payment be arranged? Who will train a new employee? Who will learn about wage and benefit regulations?
- Who will explore options for home modifications, durable medical equipment, and technological devices that will optimize independence and necessitate less hands-on care?
If families are exploring assisted living options, the following questions should be considered:
- 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 paid 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?
In evaluating skilled nursing facilities, the following issues should be addressed:
- 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 Center of Medicare and Medicaid Services website, www.medicare.gov , 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 resident’s rooms?