Help at Home

While a diagnosis of MMIHS and the hospital stay is quite a journey in itself, being discharged and establishing care at home means charting a whole new course too. Things often intensify as important and ongoing issues present themselves in a new environment, outside of the hospital setting, without the constant support and supervision of medical personnel.

As unique as MMIHS can be to each individual, the concerns for each family are unique as well. Matters such as employment, home care, insurance coverage, and state requirements will vary by individual. However, we hope that this section will provide some answers as to how MMIHS families have continued to provide their family members with exquisite care outside of the hospital and in their very own home.

Who within the hospital setting will help you figure out what your options are and coordinate the services?

The Case Manager or Discharge Planner is responsible for contacting agencies, making the referrals, and confirming with them if they are in contract with the insurance agency.  They will also transcribe the discharge orders with the co-signature of the physician, to coordinate the care and delivery of supplies.  

Typically, they will meet with the family in the hospital and review the agencies in the area the family has to choose from. Sometimes, there may be several choices.  In smaller communities, there may only be one or two agencies who can provide.  

One of the challenges with rare disorders is that the patient may be hospitalized several hours or states away and finding agencies who can provide central line infusions and supplies, and G tube pump and supplies, can be challenging.  If that is the case, you then need to find a national agency who can cross state lines and transfer the services within 48 hours of arriving home.

Another resource some hospitals have is a Special Needs Clinic.  This clinic may be under another name, but it’s role is to coordinate follow up visits with the many different specialties and help families stay organized as much as possible.  The general rule to qualify for this assistance is to have 3 or more specialties involved in your care, although this may vary from one facility to another. 

!Tip! All families with on-going, long-term, chronic needs, should request a case manager from their insurance provider to help navigate the system.  They can be a valuable resource in understanding their benefits and what can be provided for under the plan they are on.

How is the need determined?

The need is largely determined by the person’s physician and more so the individual’s insurance plan. This also determines the number of visits (or hours/day if you qualify for a private duty nurse) you can receive. 

Plans vary, some may allow 2 to 3 visits a week until the family is independent, as deemed by the agency.  Others may say from the beginning they will only allow for 1 or 2 visits and each visit thereafter will require prior authorization or be denied.  In those cases, the family may choose a "self-pay" agreement with the nursing agency for additional visits. 

Options for additional Home Health Care:

Based on the need, there are three different types of home health care services.

Skilled Nursing Visits

A Skilled Nursing Visit is a visit to a person's place of residence, on an intermittent basis, by a registered nurse or licensed practical nurse who is under the supervision of a RN, to initiate and complete professional nursing tasks based on an assessed need for services to maintain or restore optimal health.  

A nurse will come to the home and perform assessments, teaching (Central Lines, medications, tube feedings, etc.), nutrition education/monitoring, and weight checks.  

The goal of these visits is to help the families become independent with care and provide a resource for transition from the hospital to the home.  They can last from one week up to 60 days. 

PCA-Personal Care Assistance

Personal care assistance (PCA) services provide assistance and support for persons with special health care needs. PCA services do not require an order from a physician and are provided in the recipient’s home or in the community when normal life activities take him/her outside the home.

In most cases, recipients must have an assessment for PCA services by an assessor through a lead agency (a county, tribal government, or managed care organization).

If PCA services are assessed to be appropriate, most recipients are allowed to use the assessed services how and when they want for the duration of the qualified time. The recipient can often also decide which direct care staff will be providing the services.

Private Duty Nursing

Private Duty Nursing is for patients who require skilled nursing level of care 8 to 16 hours a day. 

How is the cost of these services covered?

Typically, the nursing agency will obtain a prior authorization before coming to the home.  The insurance plan will approve or deny eligibility based on coverage and if there is a co-pay, the agency should make the family aware of the pending charges prior to delivery of services.   The family will be expected to sign the service agreement at the beginning of the visit.