Tag Archives for Rhode Island General Assembly

RI’s State Alzheimer’s Plan Won’t Sit on Dusty Shelf

Published in Pawtucket Times on November 1, 2013

Seeing a huge rise in Alzheimer’s Disease over the last two years, federal and state officials are gearing up to strategize a battle to fight the impending epidemic.

According to the Rhode Island Chapter of the Alzheimer’s Association, in 2013 an estimated 5 million Americans age 65 and older have Alzheimer’s disease. Unless more effective ways are identified and implemented to prevent or treat this devastating cognitive disorder, the prevalence may well triple, skyrocketing to almost 16 million people.

Furthermore, national health care costs are spiraling out of control, says the nonprofit group’s Facts Sheet. By 2050, it’s estimated that the total cost of care nation-wide for persons with Alzheimer’s disease is expected to reach more than $1 trillion dollars (in today’s dollars), up from $172 billion in 2010.

Meanwhile, with 24,000 Rhode Islanders afflicted with Alzheimer’s Disease, every Rhode Islander is personally touched, either caring for a family member with the cognitive disorder or knowing someone who is a caregiver or patient.

In February 2012, the U.S. Department of Health and Human Services released its draft National Plan, detailing goals to prevent or treat the devastating disease by 2025. Almost six months later, in May 2012, the Rhode Island General Assembly passed a joint resolution (The same month that the final National Plan was released.), signed by Governor Lincoln Chafee, directing the state’s Long Term Care Coordinating Council to lead an effort to create a state-wide strategy to react to Rhode Island’s growing Alzheimer’s population. Almost one year later, a 122 page document, the Rhode Island State Plan for Alzheimer’s Disease Disorders, was released to address the growing incidence in the Ocean State.

In July 2013, with the graying of the nation’s population and a skyrocketing incident rate of persons afflicted with Alzheimer’s disease, the Chicago-based Alzheimer’s Association and the U.S. Centers for Disease Control (CDC) and Prevention released a 56 page report that called for public health officials to quickly act to stem the growing Alzheimer’s crisis. .

Battle Plan Against Alzheimer’s Disease

The State’s Plan to battle Alzheimer’s Disease is the culmination of a yearlong effort co-chaired by Lt. Governor Elizabeth Roberts and Division of Elderly Affairs Director Catherine Taylor, in partnership with the state chapter of the Alzheimer’s Association.

Much of the research and writing was conducted by six subgroups (Caregivers, Access, Legal, Workforce, Long-Term Care, and Care Delivery & Research) formed to identify and tackle the many challenges that Alzheimer’s disease poses to individuals, their families and to the health care delivery system. .

At their meetings, the subgroups drew upon the expertise of staff at the Geriatric Education Center at the University of Rhode Island, the Brown University Center for Gerontology and Health Care Research, the Brown Brain Bank, and the Norman Price Neurosciences Institute and the Alzheimer’s Prevention Registry

Public input was crucial in the development of the State Plan. Eight listening sessions were held across the Ocean State, two of them held with Spanish translators, at public libraries and local YMCAs, to get the opinions of those with the cognitive disorder, caregivers, and health care professionals. The probate judges association, law enforcement and other groups with unique perspectives on Alzheimer’s Disease were invited to listening sessions, too. Finally, the draft plan was made available for a ten-day public comment as part of the extensive outreach process.

The narrative in each section, nicely pulled together by Lindsay McAllister, the Lt. Governor’s Director of Health Policy, reflected many of the concerns and challenges identified by many presentations and discussions in each of the subgroup meetings over several months. The State Plan details 30 pages of recommendations outlining solutions and specific steps to be taken for preventing and caring for persons with Alzheimer’s Disease for six identified areas.

A Sampling of Recommendations

The plan encourages the development of social media networks as resources for caregivers, also calling on utilizing existing caregiver newsletters to detail more information about the Ocean State’s specific programs and services. It also calls for better training and education opportunities (for young children) to help them understand the devastating disorder and the creation of a two-week certification program, offered by local colleges and universities with input from the state’s Alzheimer’s Association.

In addition, the plan recommends the timely dissemination of research findings and best practices in nursing facilities, dementia care units, and home care to providers and families. Meanwhile, recommendations note the need to standardize dementia training and educational programs as well as the certification of facilities that offer dementia-specific care so that individuals and families impacted by Alzheimer’s Disease can rely upon high quality “dementia capable” care that they can find more easily.

The plan pushes for all Employee Assistance Programs (EAPs) to receive information about referral resources for employees requiring more intensive or long-term mental health services. EAP’s might also provide educational and informational resources on caregiver support for families dealing with Alzheimer’s disease.

Another key recommendation is the development of an internet resource referred to as the Rhode Island Alzheimer’s Disease (RIAD) Web Site. The site would enable better coordination among researchers and clinicians and assist them in recruiting participants for clinical trials and research studies. It would also provide consistent centralized support to individuals living with Alzheimer’s and their families by making practical care giving information readily and easily available.

“AARP has a long history of supporting Alzheimer’s patients and their families,” said AARP Rhode Island Advocacy Director Deanna Casey. “We applaud the effort in Rhode Island and Lt. Gov. Roberts’ efforts on behalf of those who suffer from the disease,” she says.

Casey says “far too many of our nonprofit’s 130,000 Rhode Island members are painfully familiar with Alzheimer’s, and the work of the many stakeholders in this effort is further indication of the great need to recognize our collective responsibility to help families through what is a most challenging journey.”

“Rhode Island has a tremendous opportunity to be a national leader in response to this disease,” she believes.

Briefing by Key Supporters

Two days ago, the full Alzheimer’s Work group kicked off the implementation phase of the Rhode Island State Plan on Alzheimer’s Disease & Related Disorders, discussing how to move forward with the goal of getting the recommendations up and running.

In Room 116 at the State House, Lt. Governor Elizabeth Roberts and Director Catherine Taylor of the Division of Elderly Affairs were clearly pleased to see their year-long initiative moving into its implementation phase to assist the State to handle a growing number of persons with Alzheimer’s Disease.

On the heels of a nationally released plan to address the Alzheimer’s epidemic, Taylor tells me that it was “great timing” for the Rhode Island General Assembly to enact a joint resolution to create a state plan to “respond to Rhode Island’s specific needs and gaps of service.” She credits the Rhode Island Chapter of the Alzheimer’s Association with the getting the ball rolling on this major health care policy initiative.

According to Lt. Governor Roberts, public sessions where care givers and people with Alzheimer’s Disease told their personal stories allowed the Subgroups to understand the personal impact of the devastating disease on both the afflicted and caregivers. For instance, the listening sessions made it very clear that the specific care needs of middle age adults with early onset Alzheimer’s Disease is quite different from those who are decades older, she said. Taylor agreed, citing adult day care eligibility requirements which keep those under age 60 from participating in this program, one that provides respite care to caregivers.

Lt. Governor Roberts states “younger people can not relate to programs that are developed for older people.” The patient must become the center of treatment rather than the treatment geared to age, she says.

Both Lt. Governor Roberts and Taylor do not want to see the State Plan sit on a dusty shelf, noting that it now becomes important to implement the written plan’s recommendations. “Let’s get the ball rolling now,” says Taylor.

While many of the State Plan’s recommendations may take time to implement, some are easy to implement like a Spanish language support group, says the Lt. Governor. Taylor states that RI has already requested a modification to the Medicaid waiver to expand Adult Day Health Center eligibility to individuals younger than 60 who have a diagnosis of Alzheimer’s.

Senior Police and Fire Advocates need to be trained in every Rhode Island community about Alzheimer’s Disease and resources available for caregivers, states Taylor. “These individuals know those who need programs and services in the community,” she notes, adding that an information conference is scheduled this week to train these individuals.

Lt. Governor Roberts believes that the State plan is a “living document” and it will be around as long as there is one person with Alzheimer’s Disease.”

To review the State plan go to http://www.ltgov.state.ri.us/alz/State%20Plan%20for%20ADRD%202013.pdf.

Herb Weiss, LRI’12, is a writer covering aging, health care and medical issues. He can be reached at hweissri@aol.com.

Rhode Island General Assembly Tackles Senior Issues

Published in Pawtucket Times, July 19, 2013

At the end of June, Rhode Island lawmakers passed the state’s $8.2-billion FY 2014 state budget bill, sending it to Governor Lincoln D. Chafee’s desk for his signature. Even with $ 30 million ultimately slashed from the state’s fiscal blueprint because of lower-than-anticipated revenues, cash strapped taxpayers were happy to learn that they will not see any state tax or fee increases.

            Political correspondents in print, electronic media and in web site blogs zeroed in on specific items in the state’s enacted budget plan, those that they judged as weighty and newsworthy to be detailed to their audience.  Like the phoenix rising from the ashes, the FY 2014 state budget brought back to life the state’s historic tax credit (through the efforts of Executive Director Scott Wolf, of Grow Smart and a broad based coalition of over 100 groups), also putting dollars into workforce development, even helping the Ocean State’s burgeoning artist community by enacting a state-wide sales tax exemption on specific types of art purchased.  With the budget now signed into law, Rhode Island liquor retailers are able to compete against competitors in nearby Massachusetts because of a new 16-month trial period for tax-free wine and liquor sales.  

            One of the more controversial items in the FY 2014 state budget that fueled heated discussions on WPRO and WHJJ radio talk shows was putting funds in the state budget to pay the first installment payment of $2.5 million on the bonds issued to the now bankrupt 38 Studios. 

 

Funding Programs and Services for Seniors

            Although not widely reported in many media outlets, Rhode Island lawmakers did not turn their back on aging baby boomers or seniors.   

            The FY 2014 budget provides $1.0 million in Community Service Grants to organizations serving the elderly, including $200,000 for meals on wheels, $25,000 for Home and Hospice Care and level funding for Senior Centers across the state.

            It also consolidates funding for care for the elderly, consistent with the Integrated Care Initiative.  This initiative will coordinate care of the elderly, many of whom are eligible for both Medicare and Medicaid and who navigate disjointed payment and delivery systems.  With the state’s enacted budget, there will be a single funding and delivery system that integrates long term, acute and primary care to dually-eligible individuals.

            Also, the state’s budget plan maintains the Rhode Island Pharmaceutical Assistance to the Elderly program (RIPAE), coordinating with benefits provided through the Affordable Care Act and ensuring no gaps in coverage for low income seniors.

            It also directs funding for programs and personnel within the state’s Office of Health and Human Services to combat waste, fraud and abuse, including the new Medicaid Fraud Control Unit, to ensure Medicaid dollars return as much value for participants as possible.

            The enacted budget also establishes $80,000 for the Emergency and Public Communications Access Fund to improve emergency communication and to support emergency responder training for the deaf and hard of hearing population in the State.

TDI Expansion Becomes Law

            Meanwhile, on July 3rd, Rhode Island lawmakers approved legislation (S 231 B, 5889A), sponsored by Sen. Gayle Goldin (D-District 3, Providence) and Rep. Elaine Coderre, (D-District 60, Pawtucket) to expand temporary disability insurance to employees who must take time out of work to care for a family member or bond with a new child in their home (see my May 17 issue of the Pawtucket Times, May 19 issue of Woonsocket Call).

            Women’s Fund of Rhode Island CEO Marcia Conė and the WE Care for RI coalition, consisting of over 40 groups, brought in national politico operative, Steve Gerencser, who consulted and developed the game plan and messaging needed to get the TDI legislation passed and onto the Governor’s desk for signature.  Rhode Island becomes the third state in the nation to pass a paid family leave law.

            Signed by Democratic Governor Chafee, the new law will increase the state’s TDI program to cover up to four weeks of wage replacement for workers who take time off to care for a seriously ill child, spouse, domestic partner, parent, parent-in-law or grandparent or to bond with a new child, whether through birth, adoption or foster care. Temporary caregiver benefits would be limited to those who are the caregiver of their sick or injured family member, and the program would require documentation from a licensed health care provider.

            “The most important reason for this legislation is to provide support to help families in times of need, but it has many good ripple effects for Rhode Islanders,” noted Coderre. This includes saving on avoidable medical costs for people who will be able to stay home with a family member instead of needing to admit their family member to an expensive medical facility. It can mean that someone keeps their job.

            Adds Senator Goldin, unpaid leave isn’t always an option, and it’s a very difficult option for most families. “Paid caregiver leave is a cost-effective way to keep people from losing their jobs, jeopardizing their financial security or risking their family’s well-being when a family member needs care,” she said.

            The expansion would be funded through employee contributions, just as the rest of the TDI program is currently funded. In order to support the expanded benefits, employees would contribute another 0.075 percent of their income to TDI. For a worker earning about $40,000 a year, this would mean he or she would pay an additional 64 cents a week for the expanded benefit.

Also Becoming Law…

            Governor Chafee has also signed the Family Caregivers Support Act of 2013 passed by the Rhode Island General Assembly.    

            Aiming to improve the quality of life for the elderly and the disabled in the comfort of their own homes, an approved  legislative proposal requires the Executive Office of Health and Human Services to develop evidence-based caregiver assessments and referral tools for family caregivers providing long-term care services.

            Sponsored by Rep. Eileen S. Naughton (D-Dist. 21, Warwick) and Senate Majority Whip Maryellen Goodwin (D-Dist.1, Providence), the legislation calls for an assessment that would identify specific problems caregivers or recipients might have, carefully evaluate how those situations should be handled and come up with effective solutions.

            The legislation defines “family caregiver” as “any relative, partner, friend or neighbor who has a significant relationship with, and who provides a broad range of assistance for, an older adult” or an adult or child “with chronic or disabling conditions.” Rep. Naughton said people should be aware that there are support systems and an abundance of resources available for home care before deciding to put an elderly person in a nursing home or an expensive facility.

            Senator Goodwin added that without the proper support, the current system can place an unnecessary burden on both facilities and caregivers.

            “We want fewer individuals going into nursing homes and similar facilities if we can help it,” says Rep. Naughton. “It’s upsetting for an elderly or disabled individual to have to trade the comfort of his or her home for an unfamiliar place. Family caregivers not only know the medical needs of these individuals, but are often aware of their emotional needs, too,” she said.

            The comprehensive assessment required as part of Medicaid long-term service reform is meant to provide assistance with activities of daily living needs and would serve as a basis for development and provision of an appropriate plan for caregiver information, referral and support services. Information about available respite programs, caregiver training, education programs, support groups and community support services is required to be included as part of the plan for each family caregiver.

Addressing Long Term Care Needs

            Other approved legislative proposals, supported by the state’s nursing facility industry, were also signed by Governor Chafee.  

            Lawmakers passed and the Governor signed legislation to permit pharmacies that sell medications to nursing homes to buy them back, with a “restocking” fee.  Under the new law, medications that are individually packaged, unopened, and meet other safety requirements as determined by a pharmacist can be used rather than being discarded.

            Also signed into law were measures that promote “aging in place” and direct the state’s Department of Health to review regulations to permit this.

            Finally, the Governor signed the Palliative Care and Quality of Life Act, which establishes an advisory council and program within the Department of Health. Also, beginning in 2015, every health care facility must establish a system for identifying patients or residents who would benefit from palliative care and provide information and assistance to access such care.

             Virginia Burke, CEO and President of the Rhode Island Health Care Association (RIHCA), observed that this year’s legislative session had mixed results for nursing home residents.  Most of the bills that the group supported did pass, which “should lead to enhanced care for our residents,” she says. 

            According to Burke, “Unfortunately, providers were anticipating an adjustment to their rates this fall to address price increases in things like insurance, food, and utilities and that was taken away due to the budget deficit.  We’re very lucky that Rhode Island providers are known throughout the nation for their delivery of quality care, but quality begins to suffer when providers don’t have adequate resources to do the job.”

            This year difficult budgetary choices were made to balance the state’s budget.  Although aging advocates did not get everything they pushed for, Governor Chafee and the Rhode Island General Assembly did fund programs and services that are sorely needed by the state’s growing senior population.  I urge lawmakers to continue these efforts in the next legislative session.  

            Herb Weiss LRI ’12 is a Pawtucket-based writer who covers aging, health care and medical issues.  He can be reached at hweissri@aol.com

 

Rhode Island Families Can Benefit from Expanding State’s TDI Program

Published in Pawtucket Times, May 17, 2013

In the 2012 legislative session, it was very easy for Pawtucket Rep. Elaine A. Coderre to say yes to Sen. Rhoda E. Perry, when the Providence lawmaker came looking for a House sponsor of S 2734. Perry’s legislative proposal would amend the State’s existing Temporary Disability Insurance (TDI) program to include coverage for caregivers who care for loved ones during a health care emergency or to take time off to bond with a child.

Years before, unexpectedly being pushed into the role of caregiver would bring Coderre to become the primary sponsor of H 7862, the companion bill to S 2734. To the disappointment of the Pawtucket lawmaker and her Senate colleague, their legislative proposal would be held for further study, effectively killing it.
Understanding a Caregivers Needs

In 1997, taking care of her dying mother became time-consuming for Coderre, a part-time lawmaker who served full-time as Executive Director of the Emergency Shelter of Pawtucket. Before the onset of the terminal illness, Coderre’s 78-year-old mother had lived independently on the second floor of her daughter’s three floor tenement.

With her elderly mother quickly losing her ability to live independently, being diagnosed with fourth stage Alzheimer’s disease and fourth stage colon cancer, the fifty-year old Coderre instantly became a very stressed caregiver

For over ten months, Coderre skillfully juggled the responsibilities of working two very challenging jobs, meeting family demands, and becoming the primary caregiver to her frail mother. To provide care seven days a week, 24 hours a day, Coderre would rely on her husband, three adult children, sister and her husband, to assist.

“It was a scheduling nightmare, remembered Coderre, referring to the complexity of making sure each family member was inked in the schedule and were notified when to report for duty. “We were committed to making my mother, in her final days, feel safe, secure and to have a quality of life,” she said, noting that her family did work well together, making the care giving schedule work

Looking back, Coderre considers herself extremely fortunate because she had her immediate family and was able to hire a homemaker, to provide more of the physical care, from 9:00 a.m. to 4:00 p.m.
Supporting Temporary Caregiver Insurance

But, Coderre realized from this experience and calls from constituents that not everyone has a large network of family and friends, or adequate finances to take care of a very sick loved one, even to know where to find caregiver support services. Becoming a care giver to a frail family member, an experience that many Rhode Islanders will face during their adult life, pushed Coderre to again become the primary sponsor of House legislation to create a Temporary Caregiver Insurance Program (TCIP), for the second time around.

During the 2013 legislative session, Coderre has joined Sen. Gayle Goldin, who represents areas in Providence’s Eastside, to reintroduce companion measures in the Rhode Island General Assembly (H 5889 and S 231) to create a TCIP. The legislative proposal, modified to address opponent concerns from the last session over the length of the benefit, would expand TDI to employees who must take time out of work to care for a family member or bond with a new child in their home.

If enacted, employees would be eligible to receive up to 8 weeks of replacement income while providing care for a seriously ill family member or new child. The law would provide employees with job security by allowing them to return to work when their caregiver responsibilities have concluded. The average weekly benefit for an employee would be $408.

Like Coderre, Goldin, a first-term Senator, had her own life experience as a caregiver. Over the years she, as a family advocate, she has also talked with many parents who told her of their own children’s health needs and financial and emotional stress it created and how important this program was for them.

“Paid family leave is a cost-effective way to give employees the time to balance family and work responsibilities without jeopardizing their economic security,” said Goldin.

In the early 2000s, Goldin’s interest in research on TCIPs was piqued when the program was implemented in California. Last year, as a member of the Providence-based Women’s Fund of Rhode Island’s Policy Institute, she brought this knowledge to the table when working with seven women to get legislation introduced on Smith Hill.

At that time, out of five state’s nationwide that had TDI, like Rhode Island, identified two (California and New Jersey) allowed the program to be used by caregivers, not just those who are suffering the illness or injury themselves.

The research findings gathered from the Women’s Fund of Rhode Island’s Policy Institute would give ammunition to Sen. Perry and Coderre to push for the TDI program expansion in 2012. When Goldin took over Perry’s Senatorial seat when the long-time Providence Senator retired, she picked up the TDI cause, bringing Coderre back to the plate this legislative session, to assist her in the House.
Advocates Rally to Support

On April 11, eleven groups, including AARP Rhode
Island, the Senior Agenda coalition, Woman’s Fund of Rhode Island, the Economic Progress Institute, Rhode Island Kids Count, and the Rhode Island SEIU State Council, came before the House Finance Committee, to push for passage of H 5889.

Dr. Marcia Conè, Ph.D., CEO, of the Woman’s Fund of Rhode Island, told lawmakers that the TCIP is just an updated extension of the current TDI program that “best addresses the new health and lifestyle changes of today’s society, giving “everyone the flexibility of needed to balance the new realities of family and work responsibilities.”

To put the brakes to a “brain drain” out of the Ocean State, due to higher salaries available in bordering states, Dr. Conè stressed that H 5889 would offer what all employees need, time off to care of family business in a crisis. “The prestige of having the most family friendly work environment in New England is a very strong incentive for families to stay in the state to make Rhode Island their home,” she told the panel.

In her testimony, Executive Director Kate Brewster, of The Economic Progress Institute, stated that the state’s Parental and Family Medical Leave Act of 1987, and the Federal Family Medical Leave Act of 1993, give employees up to 13 weeks of “unpaid leave” to care for a family member or new child. “These laws protect employees’ jobs, but not their wages,” she said, observing that low-income Rhode Islanders can not afford to take unpaid time off from work, they need their wages.

Countering Brewster’s comments, submitted testimony by R. Kelly Sheridan, representing The Greater Providence Chamber of Commerce, warned that H 5889 would expand the State’s existing TDI program to allow employees time off to care for family members, when most states do not even have a TDI system. This expansion “would make Rhode Island’s business climate an outlier compared to our neighboring states and would send the wrong message to the business community regarding improving the business climate in our state,” he said.

While Matt Weldon, Assistant Director, of the State’s Department of Labor and Training, took no position on the TCIP legislative proposal, he came to answer questions. Weldon noted that there could be a .2 increase to the rate an employee is mandated to pay into TDI. Currently, the state program takes 1.2% of the first $61,400 out of an employee’s paycheck.

Maureen Maigret, Policy Consultant for the Senior Agenda Coalition of Rhode Island, told the House panel that nobody can predict when a family crisis will come, specifically “the critical illness of a child or spouse, an older person’s fall and subsequent need for care.”

Maigret estimated, for just pennies per week paid by workers – the cost of a cup of coffee — passage of H 5889, would allow workers to take temporary leave to deal with sudden critical family needs and still have some income.

With the Rhode Island General Assembly gearing up to finish the people’s legislative business by the middle of June, We Care for Rhode Island (WCRI), a grass roots coalition consisting of 32 organizations, including small business owners, workers, policy centers and family and health care advocates, was established at the end of April, to push for the passage of a Rhode Island TCIP.

Last Saturday, visiting local retail stores on Hope Street, Steve Gerencser, of WCRI, passed out literature, calling on owners to support his group’s attempts to create a TCIP in the Ocean State. “It can be a boon for businesses,” he says, citing a 2011 research study detailed on his Legislative Fact Sheet, supporting the passage of H 5889 and S 231. Gerencser notes that the findings estimate that program would save employers $89 million a year by improving employee retention and reducing turnover costs.

Goldin agrees with WCRI’s assessment a TCIP’s benefit to businesses. Moreover, she claims that there is really no impact on the State’s budget, to start up this new program. “It’s revenue-neutral and is solely funded by the employee, business owners and taxpayers do not contribute.”

With a negligible expense to implement, with no cost to the taxpayer or even the business community, it’s penny-wise and pound foolish for state lawmakers to not create a Temporary Care Giver Insurance Program, to financially assist Rhode Island employees when they take off time to help seriously ill family members or to care for newly adopted child.

Sound public policy, like this legislative proposal, can only send a clear message across the United States, that the Ocean State is finally taking steps to become more family-friendly, a great way to competitively attract large corporations and even smaller businesses into our borders.

Herb Weiss, LRI ’12, is a writer covering aging, health care and medical issues. He can be reached at hweissri@aol.com.