Family Support Dialogue Family Support Topic

More research is needed to demonstrate the cost benefits of family caregiver support programs. Supporting family caregivers can reduce undesirable placements in institutional settings, prevent avoidable hospitalizations, improve care coordination, and enhance the overall health and wellbeing of individuals with disabilities. However, the research on cost benefits is very limited. Particularly as more states move to managed... more »

Research is needed to demonstrate how respite for family caregivers may be cost-effective in terms of preventing institutionalization of the care recipient, enabling caregivers to maintain their own good health as well as that of the care recipient, etc.

Respite is often the most frequently requested family support service. However, according to the ARCH/ACL Expert Panel on Respite Research, which will be issuing respite research recommendations this summer, high quality research on respite outcomes for the family caregiver, the care recipient and the family as a whole, including cost benefits, is limited and often fraught with methodological problems. More and better... more »

If a caregiver is providing care, allow them to have a tax credit, for the sheer savings to the tax paying public of not having medicaid bear the costs of giving care. In the past 5 years, as a caregiver, I have saved taxpayers thousands and thousands of dollars by providing care to an elderly family member, versus relying on the government to care for the individual. Give credit where credit is due.

Caregiving results in an overall cost to business of $33.6 billion per year due to absenteeism, supervisory time, unpaid leave, and reduced hours. Family caregiving is also estimated to add another $13.4 billion or an 8% differential to healthcare business costs. How do we convince companies to provide resources to help their employees manage their jobs and their caregiving responsibilities?

The most important thing for caregivers, and the family members we/they care for, is an occasional break so we can have social interaction outside the home. To take a break we need backup assistance from time-to-time that we can count on. Independent Living Centers (CILs?) have provided no assistance in this regard. Shouldn't that be one of their core functions? What do CILs do--just advocacy?

At any rate, we need... more »

The National Council on Disability 2012 report, "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities," identified numerous knowledge gaps. How many people with different types of disabilities are attempting to raise children? How many of them are involved with child welfare systems? What kinds of supports are available to them ( and where)? What are their outcomes? This field is wide open, and the... more »

We all know caregiving is difficult and requires a team. There are many resources available to caregivers but caregivers have challenges reaching out and asking for help.

Building a care team and developing a care plan can avoid some caregiver heath challenges, how do we make it okay to ask for help?

More research is needed examining the role that siblings play in the support and caregiving of their brothers and sisters with disabilities across the life course. The perspective of the siblings with and without disabilities is important to examine. We need to better understand how siblings can successfully transition into caregiving roles, what facilitates siblings to support the self-determination of their brothers... more »

The level of long-term chronic stress may be causing auto-immune conditions, particularly in older mothers. As far as I know, this has not been studied, but anecdotally, practically every older mother I know who is an active advocate, also has an auto-immune disorder. Until it is identified as a problem, no one will address it with any ideas for remedies.

Many adult day programs are reasonably priced but struggle will minimal attendance. The good programs provide a wide of activities to meet the needs of participants. How do they attract more participants? If it's fear on the part of potential participants and their families, how to the programs overcome it?

Is there any research available on the creation and maintenance of neighborhood co-operatives for caregiving for vulnerable adults?

Physical burden of care might be lessened by improving the design of transfer and patient handling equipment. Up until now, deficits in the design of such equipment has been borne by care recipients and caregivers. If patients fell, or declined in function, they simply became an inpatient. Now, there is value at reducing unnecessary hazards in home care and optimizing patient function. At the same time, embed patient... more »

For many families, caregiving can have a negative financial impact. Some of this is unavoidable, but some can be ameliorated. People need more information and more options to help finance supportive services that help both the caregiver and their loved ones.

Some Medicaid and other government programs (including the VA) allow for paying people to provide personal assistance and other services to members of their family who need LTSS. In some cases, parents and spouses can be paid. I’d like to understand the impact of paying family members to provide LTSS. This includes impact on the caregiver himself or herself, economically, socially, and in terms of possible reductions... more »