CHS Cross Continuum Pediatric Ventilator Program Under Development

Each year, hundreds of children on Long Island suffer an illness or injury that requires them to be placed on mechanical ventilation to help them breathe. Many of these children are successfully weaned from these devices while in the hospital. A number of them cannot be weaned, and require continued ventilator care after their acute hospitalization. What makes this even more tragic is the fact that before now, there is no coordinated program to provide services to these children on Long Island. For this reason, these children must often be placed in programs off Long Island, or even out of state. This places a significant burden on the parents and siblings, as well as the patient because of separation. Parents are often forced to quit their jobs due to the burdens of travel to and from the facilities providing care, and a financial burden is added to their plight as well the physical and emotional challenges.

Last year, Catholic Health Services of Long Island (CHS) received a $3.2 Million HEAL grant from the New York State Department of Health to develop a Cross-Continuum Program to provide care for these ventilator dependent children. The goal of this program is to support the child and their family in the best setting for their current situation, rather than focus on meeting their needs in one particular program. CHS is uniquely qualified to provide this cross-continuum support because of the various specialty programs it provides. St. Charles Hospital provides acute rehabilitation services to help the child transition from the acute care hospital, and prepares them and their families with the support and skills they need for extended ventilator care. The goal of care at St. Charles Hospital is to strengthen the child and prepare for discharge to home after several months of care. Catholic Home Care moves in with support in the home with their specialized pediatric services. If the child cannot be safely maintained at home, then they will be cared for in a special unit being developed at Our Lady of Consolation Nursing and Rehabilitative Care Center. This unit will also be available to provide respite care for a couple of days to a couple of weeks when families need a break from providing care in the home.

Once these programs are developed and fully implemented, there will be for the first time a coordinated program for the on-going care of ventilator dependent children on Long Island. The necessary approvals for construction and ongoing funding of the units at St. Charles Hospital and Our Lady of Consolation Nursing and Rehabilitative Care Center are in progress. Watch for updates and more information in coming months.

Chapter 4: Care after a Hospitalization

Arranging care for a parent or loved one after a hospitalization can be a maze of options. You may be pressed by the hospital’s care management department to make arrangements quickly, as the day of discharge approaches. At the same time, you feel pressed to find the optimal care setting and to do so with the available financial resources.

Under Medicare or commercial insurance, a patient coming out of the hospital will only get intermittent home care for a few months.  That means a nurse will make home visits a couple of times a week to check and monitor symptoms, medications and progress. These visits may be more frequent if some sort of skilled service such as injection or dressing change is needed. Various rehabilitation therapists may set up an exercise program and also visit several times a week to work toward improved ambulation, transfers, and endurance.  For the months that the nurse or therapists come, the insurance will provide home health aide services about two hours at a time several days a week-- to support the plan with activities, exercise, and bathing. This coverage may not be enough for the patient to be maintained at home without additional private resources.

If the hospitalization was for an advanced illness and the patient meets hospice eligibility criteria, there is more generous aide coverage.  Depending on the patient’s needs, hospice generally will cover daily aide service for up to four hours a day.  What families usually do is arrange for this aide service for hospice and have them do the daily bath and health related care, and then privately hire another aide, or just a sitter (depending on what he needs) for the rest of the day.  Hospice also has volunteers who will come in and visit , but not regularly where you can count on it for coverage.  

If the patient is eligible for Medicaid, then he or she might be able to get additional aide service coverage, but this is getting more and more difficult to get approved.  State requirements for Medicaid vary, and it is best to consult with a hospital or home care social worker or an elder attorney to explore this option.  Medicaid would also give you the option of getting care in a nursing home covered if the patient deteriorates and requires that level of care.

If the patient has Medicare there is another option right after hospitalization. This option is to seek admission into a nursing home for skilled services under Medicare coverage.  That might only last a few weeks up to three months depending on needs and the requirement of skilled services, but it would gain you some time to pursue a more permanent option at home.  It also gives the social workers at the nursing home time to work with you on a Medicaid application for continued care in the nursing home after Medicare runs out, or for extra services at home when the patient leaves the nursing home.  If you want to try this option and the patient has an advanced illness, don’t go on hospice care yet as they wont pay for nursing home care in most cases (Medicare will only allow a patient to be on one Medicare program at a time-- skilled Medicare nursing home placement, or hospice, but not both).  

Making post discharge arrangements is a challenge. The options discussed here may vary depending upon specific insurance coverage, state programs, and availability of services in your community. Most home care programs need to be supplemented by the time of family and friends, and perhaps even privately paid for care. Typically, there is not a one-stop option. You will need to build a quilt of programs, people, and resources to meet your loved ones needs. The care manager or social worker in the hospital can be an important resource. They are experienced with what programs are available in your community that meet the patient’s needs, and they also typically know the coverage limitations of the various insurance plans and government programs.

Chapter 2: Getting Help at Home

As time progresses, and mom or dad’s physical functioning or cognition deteriorate to the point where they can’t remain living independently without help, there is a wide continuum of services that you can access to support them at home. Considering the older adult’s need for autonomy, the rule of thumb when planning for which service to access is to pick the one that provides the appropriate level of assistance needed to allow them to function as independently as possible. For example, a person who just is forgetful about his or her medications probably does not need to be placed in a nursing home setting prepared to provide total care. Conversely, a bed-bound person with pressure ulcers and a feeding tube and minimal resources would probably not be well served to be placed on home care. The first level of this support is home care, provided in the individual’s own home, or the home of a loved one or significant other with whom they are staying. Home care is generally an option when the individual requiring care has enough independence to be left alone for periods of time, is able to summon help if needed, and can ambulate or transfer from bed to chair either independently, or with minimal assistance. There are several types of home care: skilled and chronic.

Skilled home care is generally limited to a period of several weeks to several months. The focus of this type of home care is to provided skilled intermittent services to help the patient recover from an acute illness or injury. A Registered Nurse makes a home visit to make an initial assessment of needs and establishes a plan of care. Services planned may include additional nursing visits for ongoing symptom management, medication reconciliation and supervision, and skilled care such as dressing changes, catheter care, injections, etc. If needed, rehabilitative services in the home may be scheduled for several times a week by a physical, occupational, or speech therapist. Several hours of home health aide service several days a week may be scheduled to support the nursing or rehabilitation plan of care with bathing, exercises, ambulation, simple meal preparation, and other personal care. These services are provided until the restorative goals are met, usually within two to six months. Social workers are available to help with longer term planning.

Chronic or long term home care is focused on providing services over a longer period of time, or even permanently, to help an individual remain at home. The services again begin with a nursing assessment visit. In this case, the home supervision visits by a nurse occur only every several weeks or even monthly. Home health aide services for bathing, personal care, meal preparation, and light housekeeping can be provided up to daily for as few as two and as many as twelve hours and may be covered in whole or in part by long term care insurance or Medicaid. Twenty-four hour and live-in services may be provided, but typically are not covered by third parties such as insurance or Medicaid.

Complex care can be provided in home to enable a person to return to home sooner than might otherwise be the case. An insurance company, for example, may be willing to provide financial coverage for a home care agency to provide home intravenous infusion or medication therapy as it may be less expensive for that person to be cared for at home rather than in a hospital. Even dialysis and pulmonary ventilator care can be provided in the home setting. Coverage varies from policy to policy, and the given situation.

Safe home care of any level depends upon the availability and engagement of committed family and friends. The home care agency cannot provide staff around the clock at all times. Reputable agencies will not admit patients who do not have a safe home environment and support system available. The degree to which home care can help someone remain independently at home depends not only the availability of the resources of nurses, therapists, aides, etc., but also the financial resources the individual has to access these resources. These financial resources may be in the form of personal assets, or coverage by insurance or Medicaid. Home care agencies will make home evaluation visits without charge. The purpose of these home evaluations is to assess the needs and resources of the individual, and to determine if home care is appropriate. If so, the nurse will contact the primary care provider of the individual for medical orders and certification of the need for home care, and will plan and initiate services.