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Caregiving Chronicles will present news and analysis on caregiving topics in MetroWest and around the world, in-depth Q&As with experts in fields related to caregiving and updates and announcements about caregiving resources available in MetroWest from CaregivingMetroWest.org Program Director Douglas Flynn.


Caregiving Chronicles Q&A: Massachusetts AARP State Director Mike Festa discusses his organization's focus on helping family caregivers
By Douglas Flynn / December 14, 2015
As an organization with over 37 million members, AARP carries considerable clout when it comes to issues affecting people 50 and over in America. And AARP is attempting to use its resources and influence to support to the growing numbers of family caregivers.

In a conversation with the Caregiving Chronicles blog, AARP Massachusetts State Director Mike Festa discussed why supporting family caregivers is so important to his organization and how AARP is looking to address issues related to caregiving.

“As advocates we are looking at supporting caregivers as our No. 1 priority,” said Festa. “We believe that because of the extraordinarily significant numbers of caregivers – in Massachusetts we’re talking 800,000-plus caregivers in the state – that a lot of people are affected by it. Supporting caregivers is an important social mission of our organization. And that manifests in a couple of ways.”

The first focus in AARP’s attempt to assist caregivers is on the legislative level. At both the state and federal level, the AARP national organization, which is based in Washington D.C. and has approximately 1,800 employees in the nation’s capital, is leading the fight to create or improve laws to assist those caring for a loved one.

AARP is organized in 53 regional offices, one for each state, plus Washington D.C., Puerto Rico and the Virgin Islands. With partisan gridlock making it difficult to get much done in Congress in any area, much of AARP’s lobbying might is focused on the state level.

“What we’re doing is we’re taking the work programs and advocacy to the local level,” said Festa. “We are a national membership organization that recognizes that the action and the need to be relevant to our member and to people generally 50-plus is to do the work in the community and do the work in the states.

“I have a team in Washington that I can call upon for research, lobbying support, legislative drafting,” Festa continued. “They have all these experts in just about every area of our work, so they often will assist us in what we’re trying to do here. We’re a national membership organization where the focus of the work is at the state level.”

That includes a push on several key pieces of legislation here in Massachusetts.

“There are a number of legislative priorities that we think if those laws were to pass, it would help caregivers deal with their challenges and their opportunities,” said Festa, who put passage of the Caregiver Advise, Record, Enable (CARE) Act at the top of AARP’s agenda.

“The CARE Act is model legislation that came out of the research that was done nationally that showed that a lot of people that are caregiving are dealing with some complicated nursing and medical tasks without the benefit of either being trained or given the kind of information necessary to do the job with confidence and in some cases competently,” said Festa.

“It requires that when a patient is brought into the hospital an inquiry is made about whether the patient has a caregiver when they get home,” added Festa, detailing what the law will do. “That’s a voluntary disclosure. It’s not a legal document, but it’s an important way to document that the patient when they return home has someone, or doesn’t have someone, to care for them.

“Prior to discharge, the hospital will contact the caregiver and bring them into a conversation about what the patient may need in order to be safely and successfully kept at home. It will require the hospital to do things that aren’t uniformly done now. … They’ll be given whatever is needed. It might include demonstrations, conversations, written materials or a combination of all that. The idea is that when that person goes home the caregiver will know what to do.”

The CARE Act was filed in Massachusetts for first time this year by lead sponsors Senator Linda Dorcena Forry (D – 1st Suffolk, Boston) in the Senate and Representative Chris Walsh (D – 6th Middlesex, Framingham) in the House. Festa praised both lawmakers for their personal commitment to helping family caregivers.

“The fact both Chris and Linda have personal caregiving stories means they both understand full well the implications and frankly can persuade their colleagues more than some of us because of that personal experience,” said Festa.

Also helping in the persuasion efforts is an impressive alliance of organizations, with Festa noting that AARP is working with Mass Hospital Association, Mass Home Care, Mass COA, Healthcare for All, the Massachusetts Lifespan Respite Coalition and other caregiver groups.

“What we’ve done is we’ve engaged them in conversation to make sure they were supportive, especially with the Hospital Association since they are going to be the ones changed with implementing a lot of the law,” said Festa. “We’ve worked very closely with them and at this point I’m happy to tell you that the Mass Hospital Association has endorsed the bill, which is a big plus.”

The bill is currently in committee, and Festa stated that “we are expecting a favorable report” from the Joint Committee on Public Health. Helping its prospects is the that that no fiscal note is required for passage as the hospitals will pay for the training, written materials, etc. needed to fulfill the bill’s provisions so no taxpayer money is needed.

“The hospitals recognize that to have a caregiver properly prepared to have their loved one at home safely, that’s in the hospital’s best interest,” said Festa, who noted that the bill needs to be voted on by July 31 to be enacted this year. “Because if they’re not prepared, that’s when fractures happen, people get dropped, medication management isn’t done well and they’re going to find themselves back in the emergency room. Nobody wants that, and CMS (Centers for Medicare and Medicaid Services) is penalizing hospitals for higher re-admission.”

The AARP is lobbying for a number of other bills that could help family caregivers if passed. The organization is also supporting Mass Home Care’s push to allow spouses be paid caregivers, the drive to increase the income level for eligibility for the state’s home care program, an anti-discrimination bill “that is really directed at protecting employees who happen to be caregivers from being discriminated against by their employer by virtue of the fact they sometimes have to have a flexible schedule” and a bill to “allow nurses to practice to the full extent of that license.”

AARP’s focus on family caregivers goes beyond legislative lobbying on Beacon Hill.

“We think there’s a big piece of supporting caregivers that has to do with how can we provide and support those who provide information to allow caregivers to navigate the world that they’re challenged with,” said Festa, who singled out Caregiving MetroWest for its approach to providing information, resources and support to family caregivers.

“I’m glad to be quoted as saying that I think the Caregiving MetroWest website is the model, the ideal way of delivering that information in a very detailed, local way,” said Festa. “My personal hope is that Massachusetts can lead the nation in supporting these kinds of websites and maybe bringing them to scale for across the state.”

Festa also noted that AARP Massachusetts has been holding caregiver listening sessions to learn firsthand about the needs of the state’s family caregivers. So far those sessions have been held primarily in the Boston area. But there was one with Representative Walsh in Framingham in the fall and Festa plans to make outreach efforts throughout the state.

“As state director, I want to assure your readers that we know Massachusetts is a lot more than just the city of Boston,” said Festa. “We’re doing programs all over the state.”

And right now, many of those programs are focused on helping family caregivers.

“It’s a combination of several things,” said Festa of why caregiving issues are so important to AARP. “One is the raw numbers. We’re talking about a lot of people that this affects. We’re talking not just the loved one but the one doing the caregiving being challenged by a multitude of things. There’s an emotional component to this. There’s a financial challenge, not only delivering support and services to the loved one, but it’s financially a sacrifice because oftentimes they’re giving up hours of work to be with their loved one.

“We’re doing a lot of outreach to the 50-plus, the younger crowd of people that are eligible to be AARP members, and just generally to people 50-plus,” added Festa. “And we know that a lot of the caregiving is being done by people that age. We want to be where those people are, and those people in many cases are dealing with these challenges and these opportunities. We feel it makes us more relevant to that cohort of the population. And we also think that as a social mission we believe strongly in home and community based care.”



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