The Elephant in the Room: Long Term Care
By Kyle Pinion
With so much of the current debate in Washington, D.C. focused on lowering health care costs and increasing access for all Americans, there’s been an important facet of the reform measures that have been forgotten by most pundits, the public and possibly even some legislators: Long-term Care reform.
Long-term care services are needed when a person’s ability to provide their own care has been halted by a disability or disease. Services under the long-term care banner range from dispensing of medications to preparation of meals and bathing.
According to the SCAN Foundation, about 10 million people of all ages need long-term care and about 40% of people with long-term care needs are under the age of 65. About two-thirds of that 10 million receive their long-term support from family and friends, one-fifth receive in-home care from professionals in a community setting, and 14% receive support in nursing homes. Payment for these kinds of services can range in the hundreds per week, creating a rather large cost-burden on patients, families and care partners.
When you’re young and healthy, long term care insurance is available for investment into future planning, but once you’ve already been diagnosed with a disease, the likelihood of being able to obtain insurance is slim to none.
Throughout 2009, two pieces of legislation were being lobbied for by advocates for those living with chronic diseases and disabilities. The first (as written about by the GCDD earlier in this blog) was the brainchild of the late Senator Ted Kennedy. Senate Bill 697 would create a national, disability insurance enrollment program for all employees (with the ability to waive enrollment) and provides cash benefits for the enrolled if they find they are unable to perform two Activities of Daily Living (ADL’s) any longer due to the course of their disease or disability, these cash benefits (with average around $75 per day) are to be applied towards in-home health care.
The second piece that was being discussed was The Community Choice Act (HB 1670), which is based around the idea that all states that receive Medicaid must provide nursing home services, but needed community based services are optional, which is reflect in Medicaid spending nationally where 67% goes towards institutional services and 33% covers community based wavers. HB 1670 provides an essential alternative for people in need of long-term care services, providing a choice for people receiving Medicaid benefits. Those now living in institutionalized settings would be able to receive community supports, additionally families and caretakers will be able to choose where there loved one receives services. This bill would build on the money-follows-the-person concept and effectively ends Medicaid’s institutional bias.
In the Senate health care reform bill (HR 3590), the CLASS Act has been included as an amendment onto the bill as it is currently written. While the CLASS Act addition onto the bill has some detractors (both within the insurance industry and on Capitol Hill), it remains an integral part of the reform legislation effort, and recently survived a very close vote to keep it within the bill (51 for vs. 47 against). The Community Choice Act, while not in the bill, has been addressed in a manner of speaking, by Senator Tom Harkin’s amendment to the bill in the “Community First Choice Option.” This amendment rather than requiring states to provide the choice between institutionalized and in-home care, instead encourages that states do so. Whether this change proves to be effective remains to be seen, but it at the very least it highlights a very important issue for people receiving attendant care.
While the future of the HR 3590 remains in doubt in light of the recent special election in Massachusetts, we remain hopeful that these long-term care reforms receive the proper attention they deserve by our elected officials on Capitol Hill in order to effectively eliminate the institutional bias in Medicaid and provide greater incentives for people living with disabilities and chronic illnesses to reenter the work force.
Kyle Pinion is director of public policy and advocacy for the National Multiple Sclerosis Society, Georgia Chapter.
