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Family Support Topic

Create a Database of Family Support Resources

Create an online database of resources, caregivers, where to apply for assistance, organizations that provide assistance, day programs, after school programs and summer camps.

Also, provide funding for people to start more of these programs as they are sadly lacking here in Tennessee!

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Family Support Topic

Attending medical appointments

As caregivers, our family members couldn't always be available to attend medical appointments along with our parents. We all lived out of town or out of state. Our parents had some memory loss, so they couldn't always understand the information from the medical providers, nor relay the information to us after an appointment. We would have appreciated a service where we could hire someone to attend the medical appointments... more »

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Family Support Topic

Greater detail on advanced directives Policy/Law changes

As a caregiver and DHCPOA I would like to start a conversation and bring about policy changes to have advanced directives give greater instructions to the people who are to carry out the individuals wishes as to what to do if XYZ happens, not just, withhold nutrition and hydration if I'm terminally ill. Give deeper instructions, who do you want to provide caregiving for you if you should need it? Do you expect your family... more »

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Family Support Topic

Research how to help families understand the process of grief

One area of support I find families need is how to navigate the grieving process. Some families are aware of where they are emotionally regarding their loved one and some do not seem to be aware at all, or are very good at hiding it. As a provider, I would like more information/resources/etc on how to help a family in the grief process so that they can manage their feelings as well as provide the necessary support to... more »

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Family Support Topic

Provide tax credits for caregivers

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.

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Family Support Topic

Support for Siblings of People with Disabilities

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 »

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Family Support Topic

Amelia

When 2 people are sick sometimes they could use cleaning help. Also someone to talk to about how they feel. It would be fun to do an outing with others. Friends don't always understand you don't always want to talk disabilities. Sometimes you want to talk abilities.

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Family Support Topic

Continued Child Support for Adult Children

In the State of California there is a rarely used Family Code that states the "The father and mother have an equal responsibility to maintain, to the extent of their ability, a child of whatever age who is incapacitated from earning a living and without sufficient means."
I recently used this law to win continued child support for both of my 18 & 20 year old children with mental illnesses.
Research on this law could... more »

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health literacy of family caregivers

I am working toward my Master's degree in Nursing of Populations. My research focus is the health literacy of family caregivers. There is almost nothing about this in the literature. Older family caregivers are more likely to have lower health literacy; cognitive, hearing and vision deficits; stress; chronic health conditions, etc. All of these factors, and more, can impact one's health literacy. Healthcare professionals... more »

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Family Support Topic

Factors Impacting Family Expectations

would like to see more research (and then knowledge to practice) about the factors that most impact the development of expectations by parents/siblings/family members for their loved one with a disability (is it parent to parent support? simply access to internet information? a teacher or rehab counselor?)

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Family Support Topic

Concerns for people with disabilities who become parents

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 »

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Family Support Topic

Cost Benefits of Family Caregiver Support Programs

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 »

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