Lifespan Respite Care Background Paper

Background

Lifespan Respite is a coordinated system of accessible, community based respite options for primary caregivers providing round-the-clock care for a family member with special needs, regardless of age, ethnicity, disability or situation. Respite provides temporary relief from the responsibilities of providing care and supervision to the family member with special needs. A special need means the physical, behavioral, cognitive, emotional or personal need of a person requiring care, supervision or both in order to meet their basic needs.

Respite may also be used to provide a safe haven in the event of an emergency brought on by domestic abuse, substance abuse, and health or job crisis. Respite is a primary support service consistently requested by primary caregivers of individuals with special needs. Demand for respite in Wisconsin far exceeds available funding, programs, and qualified providers. Service access and funding are inconsistent throughout the state. In many counties respite programs have waiting lists or are non-existent. Some families have access to funding but cannot find skilled providers, while others have providers but no funding. In addition, there are no statewide standards and guidelines, resulting in fragmentation of resources, duplication of efforts, inconsistencies in service delivery, and no means to promote quality assurance.

Concerns

Primary caregivers who provide round-the-clock, in-home care for a family member with special needs search for appropriate services and supports to help meet their respite care needs. Sometimes this search forces parents or primary caregivers who have exhausted their financial, emotional and physical resources to place their family member in a foster home, nursing home, or institution.

This practice is the consequence of inadequate funding. Adequate funding would allow for the development of flexible community based respite options to help keep individuals of all ages with special needs at home, in their schools, jobs, and communities.

What is Lifespan Respite Care

Lifespan Respite provides families and caregivers the relief they need to stay healthy. It helps families continue to provide at-home care for a loved one and to stay together.

Lifespan Respite is respite which is based on a families needs, not on categories, like age, disability, income, or special need, and includes, but is not limited to the following populations: Developmental or physical disabilities, special health care needs, chronic illness, mental illnesses, emotional and behavioral disorders, Alzheimer's Disease and related disorders, medical fragility and those at risk of abuse and neglect Community-based Lifespan Networks are designed and driven by a diverse local partnerships of family caregivers, providers, state and federal agencies, nonprofit organizations, health services, schools, faith communities, and volunteers, and are a combination of shared respite resources, information, and funding.

Network Components Include: Information and referral, provider recruitment, and training, program evaluation and outcome, community involvement, access to a variety of respite options and gap funding

Without Respite

• As many as one-third to two-thirds of caregivers report physical and mental health problems due to ongoing care giving. Caregivers report 72% more headaches, 24% more stomach disorders. more sleeplessness, and 61% more depression. (National Family Caregiver Association) · Children with disabilities are almost 4 times more likely to be physically and emotionally abused.
• Without respite the risk of out of home placement for children increases by 35%.
• Without respite the risk of out of home placement for the elderly increases by 40%.

With Respite

• 90% of families report less stress.
• 80% report moderate improvement in relationships with their spouse)
• 93% report moderate improvement in relationship with other family members
• 81% report crisis care helped protect their family member with special needs from danger of abuse and neglect.
• Sixty-four percent of caregivers of the elderly receiving 4 hours of respite per week after one year reported improved physical health, 78% improved their emotional health, and 50% cited improvement in the care recipient as well
• Forty percent of caregivers stated they were less likely to institutionalize the care recipient because of receiving respite support
  

Current Status:

The National Conference of State Legislators' Promising Practice Issue Brief Summer 2000 reports "Faced with increasing consumer demands and legal requirements such as the Supreme Court's Olmsted ruling, states are revamping their long term care system. Building on their experience with home and community based care; states are creating innovative service delivery models that enable such services to respond more quickly and efficiently to the needs of people with disabilities. Among these models are consumer directed care, managed care and Lifespan Respite Care." As of April 2001 three states have passed Lifespan Respite legislation. (WI OR, NE).

The Clinton Act of 2001 - modeled after state enacted Lifespan Legislation - introduced in the summer of 2001, passed unanimously in the House and is currently waiting to be introduced in the Senate.

In 1999 Wisconsin enacted Wisconsin Act 9 Lifespan Respite Care. This act earmarked $225,000 per biennium to develop a statewide lifespan infrastructure for respite in Wisconsin. Although this is a good start, it is not enough.

Future Funding

In the upcoming 2003-2005 budget The Respite Care Association of Wisconsin is requesting an increase of $1.5 million for Lifespan Respite. This increase will provide funding for the start up or expansion of 15 local Lifespan Networks across the state, two in each DHFS region and five at large, bringing the total of local Lifespan Networks to twenty ( 20).

Each Local Lifespan Network must provide a 20% match to be used for the purchase respite services for families.

Where Will The Money Come From?

Respite is cost effective. Average hourly cost of a direct care provider is $6.35; average hourly administrative cost is $1.93 for a total hourly cost of $8.28. The monthly cost of respite, at an average usage of 11 hours per month, is $91.08. Out of Home Placement costs in Wisconsin vary. The flat rate for foster care is $302.00 per month. For children with special needs the cost is between $1,000 and $2,000 per month. The Medical Assistance reimbursable rate for Nursing Homes is $4,292.10 per month. Which option makes the most economic sense? One month of nursing home care at $4,292.10, one month of foster care at $1,000 or one month of respite care at $91.08?

Disability advocates, including folks who have lived in institutions strongly recommend closing of the state centers, and downsizing the ICFMR's and Nursing homes. The cost effectiveness of respite,-coupled with the closing the centers and shifting the funds into community based services provide for a compelling case for supporting Lifespan Respite Care in Wisconsin.

 

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