Caregiver burden is always a fuzzy topic and often ignored. Caregivers are surely under burden if the disease effects extend beyond an individuals personal level. And that is almost always the case.

Better to look for some questionnaire instrument that quantifies such burden.

Hi Gretchen,

I'm not aware of any such research.

I'm biased I admit - I'm particularly interested in the ageing perspective. As the life expectancy of people with Down syndrome has increased dramatically with better health care, there is an increasing number of middle-aged and older people with Down syndrome. About a third of people with Down syndrome who are in their 50s have dementia. So the issue of an ageing population with intellectual disability and the support needs of the individuals and their ageing parents is a growing one. Might be an interesting group to look at for the impact of policy changes?

Cases we treat in P.A have significant bureaucratic burdens to get accurate care (at times even seizure meds). Example for a period of time the Medicaid program would only allow four medications per patient per month, so individuals had to pick to treat seizure, cholesterol, diabetes, blood pressure , thyroid - as examples - challenging subject and a published paper may not put the programs in a good light.

Medicaid Managed Care? This is a new topic for me. I did not know there was this type of payor source. The type of managed care that I am used to is with the Medicare Part A patients. Instead of having traditional Medicare Part A, elders will sign up for a managed care service. Some of the elders are enrolled in United Health Care and the Skilled Nursing MDS assessments are different as in there are no 5d, 14d, 30 day assessments. Soon, in 2019, when PDPM goes into effect, the payment aspect is going to be a lot different than what we have now.

Someone mentioned Provider Burden, CMS is providing quite a bit of this with the new regulations coming out to take effect October 1, 2018, in long-term care.