AARP Working for Family Caregivers

Advocacy staff, volunteers urge passage of beneficial legislation 

As part of our continuing efforts to support Rhode Island family caregivers, the following written testimony has been prepared for hearings the week of April 1, 2019.

 

 

Governor’s Commission on Disabilities Budget – Livable Home Modification Program

Chairman Miller and members of the Senate Committee on Health and Human Services

On behalf of our 132,000 + AARP-RI members, we are in strong SUPPORT of keeping the estimated $500,000 in the budget for the Livable Home Modification Grant Program.

The State of Rhode Island has the 3rd oldest housing stock in the nation. Older homes are not age friendly.

The Livable Home Modification Grant Program allows people to stay in their home and community by giving them the tools they need. Many older Rhode Islanders have mobility problems within their home. This grant reimburses the applicant 50 % of the cost up to $5,000 for walk-in roll-in showers, chair lifts, wheel chair ramps and other modifications so they can stay in their home and community instead of costly nursing homes at which state taxpayers foot a portion of the Medicaid cost.

In the next 15 years it is projected that the age 65 + population will increase by 40%. Accessible housing will become a significant issue in the future.

Some of the benefits of this program include

• Allows older Rhode Islanders to live independently in their communities and their home while reducing state cost of Medicaid by keeping older Rhode Islanders out of nursing homes.
• Reduces financial burden of home modifications (including on caregivers).
• Increases accessible home inventory. Since the modifications are permanent each year the inventory modified age friendly homes increases.
• Reduces falls. After a fall many older Rhode Islander’s go from hospitals to nursing homes and never make it back home.

This program is currently helping many older Rhode Islanders and those that are disabled stay in their home and community and we urge this committee to maintain the level of funds requested in the budget so that this program can have a bright future.

 

Re: S-294–Family Caregivers Support Act- Caregiver Assessments      

Chairman Miller and members of the Senate Committee on Health and Human Services

On behalf of the 132,000 + AARP members in Rhode Island, we are in strong Support of S-294 that require the EOHHS to develop and submit detailed annual reports to the House and Senate Finance Committees for consideration during the annual budget hearings, the long term care coordinating council and to post the reports on the EOHHS website.

AARP was directly involved in the successful push for passage of the Family Caregiver Support Act in 2013.  The intent of this legislation is laudable and seeks significant improvements in caregiver support including that when the required comprehensive assessment is done for a person seeking Medicaid long term care supports and services at home, an assessment of caregiver needs also be done when the care recipient is relying on an unpaid caregiver for meeting some of her/his needs. It further directed that the care plan developed should address the caregiver’s needs for education, training and supports.

However, it is difficult to tell at this point whether the intent of the law is currently being implemented. This legislation would provide for more transparency and calls for EOHHS to develop annual reports on the number of caregiver assessments done and information on identified needs and referrals made for education, respite and support. Once equipped with this information, we as a state can go forward and make more intelligent decisions in rebalancing our Long Term Support Services (LTSS) more towards Home and Community Based Services (HCBS) so that older Rhode Islanders can stay in their home and not expensive long term care facilities.

 

RE: Senate Resolution 310 – JOINT RESOLUTION ADOPTION OF THE STATE PLAN ON ALZHEIMER'S DISEASE AND RELATED DISORDERS

Dear Chairman Miller and Members of the Committee

On behalf of AARP-RI and our over 132,000 members in RI, we are in SUPPORT of the joint resolution that adopts the State Plan on Alzheimer’s Disease and Related Disorders.

Last year AARP commemorated our 60th anniversary by donating 60 million dollars to the Dementia Discovery Fund (DDF), which invests in research and development of breakthrough treatments for dementia including Alzheimer disease.

There are over 30 recommendations featured in the State Plan including:

• Allocate one director-level position within the Rhode Island Department of Health to coordinate the implementation of actions in the Alzheimer's State Plan in and through the activities of public health, in close collaboration with the Lt. Governor's Office, the Division of Elderly Affairs and other agencies.
• Promote Alzheimer's disease and related dementia research opportunities of all types, including federal funding opportunities, to a broad group of Rhode Island researchers.
• Include brain health in existing publicly-funded health promotion and chronic disease management activities.

AARP- RI fully SUPPORTS this resolution as we believe the recommendations in the report provide Rhode Island with the framework to cooperatively address the full range of issues surrounding Alzheimer’s and other dementia.

 

Re: H-5909–Supported Decision-Making                                                    

Chairman Craven and members of the House Judiciary Committee:

On behalf of AARP-RI and our over 132,000+ members we are in Strong Support of H-5909 which would establish the Supported Decision-Making Act which is a less restrictive alternative to guardianship for utilization of the probate courts.

Supported decision-making agreements (SDMA) could be useful tool, where appropriate, for aging Rhode Islanders as a least restrictive alternative to a full guardianship.  An older adult can use a supported decision making agreement and retain the right to make their own decision with the support they need.  This process can be used to help plan for future decision making and avoid the need for guardianship.

SDMA is particularly useful for people with a diagnosis of early state dementia, like Alzheimer’s disease.  These individuals may have enough impairment to make a diagnosis, but may also have sufficient capacity to continue to make most of their decisions.  Nevertheless, whether by such a diagnosis, or simply by age, often these individuals seem to become invisible to medical providers, banks, and even family members and friends.  Instead, other people often direct conversation to a spouse or an adult child as if the older person is not there and couldn’t possibly understand anyway.  Not only is this a gross misunderstanding of the disease, it denies the older person the dignity and respect of self-determination and making choices.

A supported decision making agreement does not allow the supporter to make financial and other life decisions for another person.  Instead, a supporter’s help can be instrumental in helping a loved one make certain decisions.

Simply put, Supported Decision-Making is not a replacement for guardianship but rather another tool in the toolbox for a probate court judge to use in the appropriate circumstances.

We strongly urge the House Judiciary Committee to pass H-5909 that would help older Rhode Islanders in cases where guardianship is not an appropriate option for an individual.

John DiTomasso
Associate State Director - AARP-RI

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