Getting Care: There’s No Place Like Home

Professional home care providers can reduce family caregiver burnout while providing individualized service and greater independence for loved ones

Jeff Stafsholt is a Green Bay Packers fan second to none. Like the Wisconsin football champs, he has a winning attitude and a “never give up” mindset. To help manage the effects of limb-girdle muscular dystrophy, Jeff has a team of home care professionals who assist the 34-year-old as he independently quarterbacks his life.

Jeff Stafsholt, an avid RC hobbiest, with his home care provider, Tammy Yuhala.Home care nurses and personal care assistants support Jeff 24/7, managing his ventilator, suctioning and feedings, and helping him get up and out in the morning in his Dodge minivan. A home care clinical manager also visits every two months to evaluate the field staff, manage meds and listen to feedback from Jeff.

Because of this home care team, Jeff has the independence to hold a job at Wal-Mart, go to the movies and visit friends.

“My mom was a nurse,” says Jeff, “and she never coddled me. The word ‘can’t’ wasn’t in our family’s vocabulary. You always had to give it a go and give it your best. Those are words I still live by today.”

Patient-preferred and cost-effective, professional home care today is becoming an integral part of the health care continuum. Home care effectively bridges the clinic-based health care model and the actual world that people live in.

For all ages and many conditions

Home care typically has been associated with seniors, but it actually serves people of all ages. Home is where families want their loved ones to be, and it’s where quality of life can best be had.

Ranging from a one-hour weekly visit to 24-hour live-in care, professional home care provides individuals with a one-on-one focus that can be difficult to obtain in hospitals or group facilities.

Professional home care also respects cultural differences and ethnic diversities by assigning staff members not only by skill sets but also by language — from Spanish to Somali to American Sign — and by behavioral criteria, such as being nonsmokers.

Many types of health conditions can be managed at home — temporary health challenges as well as permanent disability, chronic illness and end-of-life care. Services may be medical, nursing, therapeutic, or just companionship and assistance with everyday life activities.

Recent advances in medical technology have increased the number of people who can be treated at home. Home care nurses can handle tracheostomies, ventilators, feeding tubes, intravenous therapies and many cardiac issues, as well as other complex medical needs. All such nurse activities are signed off by physicians, and patient care plans are recertified a minimum of every 60 days.

One growing service niche is pediatric care, including young clients with neuromuscular diseases. Pediatric home care fulfills a specialized function in the adage “it takes a village to raise a child.”

Lower stress for caregivers

Nathan Mayer, with his home care provider, Amy Nystuen.Nathan Mayer, 14, of Big Lake, Minn., has spinal muscular atrophy, which affects all his voluntary muscles and impairs his respiration. His mother, Lisa, with help from her husband, used to handle all of Nathan’s care, in addition to caring for his two younger siblings and working as an eighth-grade math teacher.

When Nathan was 8, the family went one Saturday to watch his dad play softball. An avid sports fan himself — he has aspirations of becoming a sports lawyer one day — Nathan got a mucus plug, lost consciousness, required CPR and was taken by ambulance to the hospital. It was then that his parents realized they needed to enlist the help of home care professionals to complement their care, in order to provide Nathan with critically necessary respiratory support and assessments (that can help avoid hospitalizations) and allow his parents to be his parents.

“Home care providers give family members a much-needed respite,” reflects Lisa Mayer. “In turn, we can provide better care because our stress levels are lower. Before home care, I would get two or three calls at work every month from Nathan’s school saying there was a care emergency. With capable home care nurses on board, I’ve gotten only two or three such calls in the last five years.”

Lisa’s advice for families with children who are living with neuromuscular disease: Early on, include people besides family members in the care process so there is a greater comfort level for your child when the transition is made.

She also strongly recommends that clinicians not hesitate to inform families about different home care options. Nathan qualified for home care funding, had a lot of equipment at home to meet respiratory and other needs, and wasn’t medically fragile. Yet medical professionals did not make the case to her that home care could viably handle his needs.

Today, Nathan is an active teen known for using an effective “charm offensive” on family and friends. He attended his first MDA camp last year along with his home care nurse Amy Nystuen. He is excelling academically — even in his mother’s math class — and has participated on not one but two national power soccer championship teams coached by his dad.

Types of home care

There are five basic home care service options:

Personal care assistants. These trained but unlicensed workers provide help with activities of daily living such as dressing, bathing, eating, getting to doctor appointments, etc. Personal care is provided with oversight from a nurse and is state-approved. The cost is typically $16 an hour.

Private duty or private pay care. These helpers are hired directly by individuals and families (not through an agency) to assist with household management needs such as shopping, cooking, transportation, companionship and personal hygiene. Some long-term care policies will cover such home care, but reimbursement terms and exclusion criteria vary. With private duty care, there is no agency oversight of performance, and rates vary according to the individual.

Licensed home care. These agencies employ a variety of health care professionals, including skilled nurses, therapists and home health aides. This type of care is typically paid for by private insurance, Medicare or Medicaid.

Medicare-certified skilled home care. Such care typically is received on an acute, intermittent basis following an illness, injury or change in disease status. Such services are physician-driven and reimbursement is contingent on the individual demonstrating progressive improvement while being homebound.

Extended-hour nursing. This is high-level one-on-one care, from four to 24 hours per day, for those with medically complex needs. It runs from $30 to $50 an hour.

Agency care easier than private hiring

Carmen Smith of Metamora, Ill., has a unique perspective on home care as it relates to neuromuscualar disease. She’s a licensed practical nurse studying to earn her RN license; she works for a home care agency; and she’s the mother of three sons named Chad, Cyle and Craig — both Chad and Craig have myotubular myopathy.

Her oldest son, Chad, wasn’t eligible for nursing care funding from Medicaid until he got a tracheostomy, so Carmen initially interviewed, trained and tried to retain personal care assistants all on her own.

There are a number of problems with hiring staff on your own. Employees don’t carry liability insurance and there’s usually no formal training for families on employment policies. There’s no backup care if employees don’t show up; it’s awkward and upsetting to have to fire someone; and hiring a new assistant can be extremely time-consuming.

Once Chad qualified for home care, Carmen realized that the agencies would manage competency testing, background screening, equipment training, TB testing, scheduling and much more.

Now working with their fourth home care provider, the Smith family knows firsthand that professional home care prevents parent burnout and exhaustion while enhancing the quality of care for their loved one.

Carmen offers advice to families considering professional home care as an adjunct to family care:

  • As with any relationship, communication is of paramount importance. Talk directly to both the nurses and agency supervisors so everybody is on the same page.
  • Set realistic guidelines for in-home behavior, such as tidiness or interactions with the client’s siblings, and discuss such guidelines ahead of time so expectations are clear-cut.
  • Be open-minded when new people care for your children in your home. It’s a balancing act on both professional and personal levels.

Without in-home nursing care, parents like Carmen can’t work and often find themselves on a grueling 24/7 care schedule. With home care, their loved ones with neuromuscular disease are less likely to have infections, skin breakdowns and hospitalizations.

Who pays for home care?

Payment options for home care include self-pay, MedicareMedicaidVeterans Administration, assistance from community organizations, private health insurance companies and managed care organizations, TRICARE and workers’ compensation.

Some of the new health insurance exchanges being created as a result of the Affordable Care Act may cover home care — look over the plan carefully or have an agency do so.

Professional home care is from five to 20 times less expensive than inpatient facility care. In 2009, for example, national charges by Medicare were $135 per home care visit, $622 per day for skilled nursing facilities and $6,200 per day for in-patient hospital care.

Funding for home care is increasing as the recognition of its cost competitiveness grows. Many insurance companies now cover extended-hour nursing and care visits. A tracheostomy patient, for example, can be approved for 24-hour-per-day care for one month and then weaned onto family care.

Handling the 'privacy problem’

Chad Heller and his brother Ryan, of Waverly, Minn., started showing signs of Duchenne muscular dystrophy early in life. Their mom, Mary, stays at home full time, but also depends on home care nurses and personal care assistants to help with ongoing care.

Based on her experience, Mary suggests parents of children with muscle disease choose care providers who have previously worked in nursing homes or with ventilators so the learning curve is shorter. (Two of her first-time aides actually fainted on the job.)

She also notes that nurses in hospitals typically don’t work with vents, and there are varying types of suction methods, so thorough training in the home is essential. Her friends say Mary “runs a tight ship” at home, requiring that care providers adhere to house protocols and act within set roles.

The issue of lack of privacy in the home was resolved when Mary and her husband Glen redesigned their 100-year-old house so that all the bedrooms are downstairs, but they have space of their own upstairs to which they can retreat while care providers are on the main floor.

Younger brother Ryan is now 34 and living in his own apartment in the Twin Cities, with the help of home care professionals. He uses his promotional talents to hook up new bands with musical gigs. Chad, 38, is more of a country boy who enjoys nature, keeps up with who is doing what in town and visits with friends online.

The family is grateful that they’ve had time together in the comfort of their own homes. Mary summed up their philosophy: “As long as they can smile, we’re doing our job and doing all right. And both Chad and Ryan have always smiled.”

Amy Nelson is founder and CEO of Accurate Home Care, the largest provider of home care services in the upper Midwest, serving a wide range of medically complex pediatric and adult clients. Contact her with questions at (866) 214-3800 or

10 Questions for Finding the Right Home Care Agency

A primary consideration for families is how to match their loved one with the right home care provider. These qualifier questions can help:

  • What process do you use to match employees with clients?
  • What type of training is given to your staff members?
  • Does your agency have licensed social workers on staff to address the emotional needs of clients and families?
  • How closely do your supervisors evaluate the quality of care provided?
  • How do you manage scheduling? Is care available around the clock?
  • What procedures are in place in case of an emergency, such as a power failure or inclement weather?
  • Are all of your caregivers licensed in their fields?
  • Can you provide references, including doctors, hospital discharge planners or clients?
  • How do you handle expenses and billing? Has your company ever been accused of fraud?
  • Will I receive an initial free evaluation as well as a written care plan before service begins?

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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