- Written by Senator Adam G. Hinds
Community supports benefit dementia patients and family caregivers
When I was in elementary school, my grandmother, whom I affectionately called Nina, moved from California to Shelburne Falls to be near our family. After school I’d walk to Nina’s apartment at Highland Village, where the two of us would watch a soap opera or golf tournament on her TV until my mom or dad would pick me up.
When I entered high school, we all noticed Nina’s short-term memory slipping. As time went on, it was not uncommon to come home to dozens of answering machine messages, all from my grandmother, all saying essentially the same thing. My mother provided the bulk of care for Nina at Highland Village, visiting whenever she could, and later at a nursing home in Shelburne.
I learned then how difficult it is to watch a family member’s personality slip away, and I’ve seen the strain a person’s dementia can put on a family.
This past fall in Pittsfield, I was invited to visit a family member support group and heard how the disease can overwhelm patients and their families. I listened to stories of physical, emotional, and economic impact that the disease can cause family caregivers. I also saw the comfort and emotional stability such groups can provide.
Nearly fourteen percent of older adults in the Commonwealth have Alzheimer’s or a related dementia. In rural Massachusetts the challenges for those with dementia and their caregivers increase, due to lack of access to medical care, support networks, broadband Internet and transportation options.
Fortunately, our region is responding. A group called Age Friendly Berkshires is working to make the County more responsive to the needs of its aging population, including those with dementia. In March, I hosted a briefing for legislators and staff at the State House with the Mass. Healthy Aging Collaborative, AARP Massachusetts and the Executive Office of Elder Affairs where Age Friendly Berkshires was invited to share their experiences. More recently, a group of hilltowns in my district—Chesterfield, Cummington, Goshen, Plainfield, Westhampton, Williamsburg and Worthington—received the Age Friendly designation from AARP and the World Health Organization. The designation comes with a commitment by the towns to improve conditions for elders. With a grant from the Executive Office of Elder Affairs, these seven communities are working to make it easier for elderly residents to age in place while reducing isolation and loneliness.
Molly Chambers, a social worker, has been doing her part to assist family caregivers for those with dementia for more than twenty years through the support group she’s run at LifePath in Greenfield. Over the years the group has supported husbands, wives, and adult children from near and far as they help each other through tough stretches and grow as close as family. LifePath offers many other supports for people with dementia in addition to the group.
“I’ve seen the strain a person’s dementia can put on a family.”
Caregiving can wear a caregiver out, sometimes to the point of illness. Imagine, Ms. Chambers says, waking four times every night to soothe an agitated or disoriented partner. Ms. Chambers believes—and I agree—that we can do better by making it easier for family members to get breaks by providing more affordable respite care. In other cases, what’s needed, she says, are grants to support home renovations or adaptations, like ramps and safe showers, which can allow those with dementia to stay in their homes longer.
Five years ago the Pittsfield agency Home Instead Senior Care began its support group for family members of those with Alzheimer’s or another form of dementia, and more recently the agency started a group for those with dementia. During my visit with the support group for caregivers, facilitated by Bobbie Orsi, Director of Community Relations at the agency and also one of the founders of Age Friendly Berkshires, I saw firsthand how the support group served to validate and normalize what caregivers and their family members were going through.
Ms. Orsi, a nurse, had to navigate these struggles herself when her husband John, an electrician, was first tested for cognitive issues in 2007 and had them confirmed in 2011. She cared for him as Alzheimer’s made him increasingly agitated and sometimes aggressive. Ms. Orsi had help from a number of caregivers from her agency, including one who accompanied John on volunteer shifts at the South Congregational Church food pantry. Another caregiver helped John do projects in their yard and accompanied him fishing at the Orsi’s home on Goodrich Pond. Dementia, Ms. Orsi noted, doesn’t take away our need to keep up our interests and the roles we serve in the community.
Removing a loved one from the home for care and safety is among the most difficult decisions a family member can face. After much family discussion, Ms. Orsi had to make that decision in late 2017. John lived out his life in a number of healthcare facilities until he died in November 2018 at age 73.
What motivates Ms. Orsi today is facilitating the support group for family caregivers. Her aim is to listen to what family members are experiencing and help them to better understand and determine what they need. The work Ms. Orsi does is essential, but there is more we can do for those with Alzheimer’s and other types of dementia.
These steps and others will require community support and political will, but they should allow those with dementia—and their family members—to live better lives.
State Senator Adam G. Hinds (D-Pittsfield) represents the 52 western Massachusetts communities of the Berkshire, Hampshire, Franklin & Hampden District. He serves as the Senate chair of the Joint Committee on Revenue. This is his second term in the Massachusetts Senate.
- Written by State Representative Natalie M. Blais, First Franklin District
Thank you to everyone who voted on November 6, 2018, in the mid-term election. In doing so, you made history. According to the Secretary of the Commonwealth’s unofficial results, more voters cast ballots in a midterm election this year than ever before in Massachusetts history. On that day, I visited all 19 communities of the First Franklin District during a 14-hour, 240-mile road trip and ultimately won the election. It was my honor to be sworn in as the State Representative for the First Franklin District on January 2.
On Swearing-in Day for the 191st General Court, I joined 24 other newly elected legislators and 135 incumbent legislators from around the Commonwealth to take the Oath of Office. The class of 2019 is the largest class since Rep. Paul Mark’s first election in 2011.
My children were by my side as I walked onto the floor of the chamber. There, I learned that my desk would be at seat number 53. This was the same seat held by the Honorable Steve Kulik, the Honorable Jay Healy and his father before him. Being the first woman to be elected to this position overwhelmed me. I am so thankful for the leadership and guidance of my predecessors and will look to them for guidance and advice as I take on this new role.
A number of procedural measures followed before we took the Oath of Office - a solemn vow that moved me deeply when thinking of all of those who have gone before me. It was particularly meaningful to have my children by my side during this historic event.
I look forward to working with my colleagues to address matters of importance to the First Franklin District including infrastructure (broadband, roadways and bridges), Chapter 70 reform, access to healthcare and turning back climate change.
There is much to be done in the weeks ahead. In addition to meeting with constituents in the District, [as of this writing] I am working to finalize a list of bills to submit by 4:59 p.m. on January 18.
Thank you to the residents of the First Franklin District who cast their vote for me. Just as I did on Election Day, I will show up for all 19 communities of this district as your State Representative. I look forward to working alongside you to bring the voices of western Massachusetts to the halls of the Massachusetts State House.
- Written by Senator Elizabeth Warren, U.S. Senator for Massachusetts
Standing up for elders and people with disabilities
One of my top priorities in the U.S. Senate is working to strengthen the economic security of seniors and people with disabilities in Massachusetts. But today, some in Washington are trying to tear apart critical programs that help people live their lives with dignity.
Last year, President Trump and congressional Republicans tried to repeal the Affordable Care Act and gut the Medicaid program that helps millions of seniors stay in their homes and live independently, and also helps pay for nursing home care for loved ones. We fought back tooth and nail and saved those critical programs. We also stopped an effort to slash the budget of the already cash-strapped agency that runs Social Security. Budget cuts have forced the Social Security Administration to cut thousands of jobs and close 64 field offices since 2010 in towns like Greenfield, leading to outrageously long wait times and leaving many older people and Americans with disabilities struggling to get their benefits. We stood up against additional cuts – and in the last budget, I helped get a $480 million increase for the agency. This was the first increase to the Social Security Administration’s operating budget in eight years.
But the fight isn’t over. President Trump’s new proposed budget is a direct attack on older Americans and people with disabilities. It contains deep cuts to the SNAP program, which helps elderly people put food on the table. It would also eliminate the Low Income Home Energy Assistance Program, which helps low-income people – including the elderly – stay warm during winters in the Commonwealth. It cuts tens of billions from Social Security’s disability benefits and guts Medicaid once again, threatening health care for low-income seniors and people with disabilities. Meanwhile, efforts continue in Washington to privatize and cut benefits for millions of seniors who rely on Social Security to survive.
At the same time the president has proposed these cuts, Congress recently voted to award $1.5 trillion in tax breaks to billionaires and giant corporations. These are exactly the wrong priorities for our country. The federal government should be investing in America’s families, and it should make sure we keep the promises we’ve made to seniors, families, and people with disabilities.
I will fight to preserve and strengthen programs like Medicare, Social Security, and Medicaid. People in Massachusetts deserve a Washington that works for them, and I’m committed to doing my part in the Senate to ensure that all Americans can retire and live with dignity.
If you would like to contact me about any issues you’re concerned about, or if you need help with a federal agency, please don’t hesitate to call my Western Massachusetts office in Springfield at 413-788-2690 or email me.
- Written by State Representative Steve Kulik, First Franklin District
Supporting spouses as caregivers in Massachusetts
A spouse, it often seems, would make the ideal caregiver for his or her partner, familiar with their wants and needs, familiar with their domestic surroundings. Yet under current regulations governing MassHealth, the state's health insurance program for people of limited means or dealing with disability, a spouse is not included among the relatives, friends or providers than can be paid to offer care.
Many of us in the state Legislature have been troubled by this paradox and been working to make a change in the regulations. MassHealth, too, has been reviewing the issue under a mandate from the Legislature. We put language in the Fiscal Year 2016 budget requiring MassHealth to complete a report by December of 2017, with a plan to implement spouses as paid caregivers. However, as of this writing, the report has not yet been issued.
One of my colleagues, Rep. Jennifer Benson of Lunenburg, filed a bill in this legislative session called "An Act Regarding Spouses as Caregivers" (H336), which would require that any program of home and community based services paid for by MassHealth, in which family members are allowed to serve as paid caregivers, should allow spouses to also be paid for their care and time.
As of this writing, Rep. Benson's bill was still being reviewed by the Legislature's Joint Committee on Elder Affairs under what is called an extension order that ends May 9. On the Senate side, a similar bill, filed by Sen Barbara L'Italien of Andover (S55), was given a favorable recommendation by the Joint Committee on Children and Families and Persons with Disabilities and sent to the Health Care Finance Committee.
Rep. Benson is hopeful that the Elder Affairs Committee will give her bill a favorable report, as she sees the benefit to so many people in need. “There are situations when a caregiver can’t be found, and a spouse is forced to give up what little source of income they have so they can stay home and care for their loved one. That pushes people who can’t afford a caregiver further into poverty. This bill would allow a MassHealth recipient to have their spouse serve as their caregiver and receive reimbursement in the same way that other family members can under current law.”
What makes the MassHealth prohibition on paying spouses particularly puzzling is that husbands or wives can earn an hourly stipend under different state-funded programs of "consumer-directed options" through home care agencies. Highland Valley Elder Services, which covers several of my towns in Hampshire County, helped introduce the model more than 15 years ago. Similar services have also been available for many years in Franklin County through LifePath. However, unlike MassHealth, participants in consumer-directed services are charged on a sliding scale. MassHealth recipients do not bear any financial burden. Also, hundreds of thousands more people are covered by MassHealth and would immediately benefit from statutory reform.
To determine the level of care a person may need, LifePath or some other provider agency will conduct an assessment of a person's ability to meet their basic daily needs such as bathing, dressing, shopping, meal preparation or managing their medications. The number of hours of care provided each week is matched to the person's needs.
When we know that spouses can be (although admittedly not always) very well-suited caregivers and when we know that helping a frail elder or disabled young person stay in their home can be more comfortable and, for the state, more economical than an institutional setting, it is time to make this needed reform and allow spouses to be paid for their time. I support both the House and Senate bills that will force a change in MassHealth regulations through statute
Steve Kulik has represented the First Franklin District, which includes 18 towns in Franklin and Hampshire counties and one town in Hampden County, since 1993. He plans to complete his years of service and retire from the Legislature at the end of 2018.
- Written by State Representative Paul Mark, 2nd Berkshire District, Chair of House Committee on Redistricting
Efforts to support our rural communities
The Massachusetts General Court created the Rural Policy Advisory Commission during the state budget process in 2015. I was recently appointed by Speaker Robert DeLeo to serve as his designee on the commission. The commission meets quarterly at venues rotating throughout our Commonwealth, including once annually in western Massachusetts. The mission of the commission is to “enhance the economic vitality of rural communities, defined as municipalities with population densities of less than 500 persons per square mile, and to advance the health and well-being of rural residents.”
Rural communities account for nearly 60% of the state’s total land area. However, the people living in these rural communities make up only 13% of the total population in Massachusetts. In Berkshire and Franklin Counties, every municipality except Greenfield, North Adams, and Pittsfield falls into the definition of rural. We face the same challenges that other rural communities all over the country face, forced to do more with less and working closely together to stretch our resources as far as possible. But unlike most similar communities elsewhere, we make up a very small percentage of the total population in an otherwise heavily urbanized state. Finding similar partners to work with and make our voices heard becomes that much more difficult.
The Rural Policy Advisory Commission and the Rural Legislative Caucus in the House and Senate exist to help find those partners we need to make our voices more powerful and to help come up with realistic solutions to the unique problems we face. By working with other rural legislators and other rural communities, we increase our effectiveness in the state government process. By finding new ways to partner with urban areas on topics of mutual interest, including services for seniors, food security, education funding, affordable housing, and transportation issues, we increase the likelihood of successfully achieving tangible and measurable results.
The next meeting of the Rural Policy Advisory Commission will take place on June 15th in Greenfield. The meetings are open to the public and there are many important topics that will be discussed. To learn more about the commission and its mission, to see a list of members and the organizations they represent, and to see reports filed by the commission with the legislature, please visit the following page on the Massachusetts state government website.
As always, please contact my office anytime we can help you with an issue in state government. Office hours are held Mondays in Greenfield, Thursdays in Charlemont and Northfield, as well as monthly at the Greenfield Senior Center and periodically at the Bernardston Senior Center. You can find the full office hours schedule and our office contact information at online. Thank you for the opportunity to serve.