Human Services Committee

JOINT FAVORABLE REPORT

Bill No.:

SB-989

Title:

AN ACT CONCERNING THE ALZHEIMER'S RESPITE CARE PROGRAM.

Vote Date:

3/10/2009

Vote Action:

Joint Favorable

PH Date:

3/3/2009

File No.:

SPONSORS OF BILL:

Human Services Committee

REASONS FOR BILL:

To update income and asset eligibility criteria, which haven't changed since the program's inception, in part to reflect the annual Social Security cost-of-living adjustment; to add personal care assistant services as a care option; and to provide, upon case review, up to $7,500 for services, instead of the maximum $3,500.

RESPONSE FROM ADMINISTRATION/AGENCY:

CLAUDETTE BEAULIEU, Deputy Commissioner of Programs, Department of Social Services, testified: “This bill seeks to increase the benefit levels of this program, add the service of Personal Care Assistant and increase the income and asset levels for participants. The department is not able to support the increased income and asset limits. The department would be in favor of greater flexibility to allow the few clients who demonstrate a need for increased services to receive them based on regulated criteria. Not all clients would be eligible for the maximum benefit of $7,500.

Since the initial legislation creating the program in 1998, clients who participate in the Connecticut Statewide Respite Care Program have been eligible to receive up to $3,500 in respite services per year to help them to continue to reside at home. In SFY'08, 813 clients (an increase in 157 from SFY'07) received services such as adult day care, companion-homemaker and home health aide. Given that there are over 100,000 individuals in Connecticut with diagnoses of dementia who may be eligible at some time for this program, many more can be expected to seek the program's assistance in coming years. While this has represented a very meaningful respite benefit for caregivers, the cap in services per client has not kept pace with the increasing cost of community-based services and may be quickly exhausted by families in need. Care Managers for this program utilize a multifaceted screening tool to ascertain the client's level of need for services, and money is allocated in varying increments in order to serve the greatest number of clients.

“n order to increase the number of service options available to care recipients under the Connecticut Statewide Respite Care Program, the Department supports the inclusion of “personal care assistants” as a service under this program. This will allow recipients to use individual providers of their choice and possibly reduce the cost of their care or allow for a greater number of hours of service since the client or their family will be able to negotiate a rate under a provided maximum level.

The department opposes the increase in income and asset limits for this program for the following reasons: Currently, the income and asset limits for eligibility under this program are $30,000 and $80,000 respectively for the individual with Alzheimer's disease. The current income guideline for the Medicaid portion of the Connecticut Home Care Program for Elders, the program offering the most similar type of services, is $22,428, and higher for the state-funded portion based upon applied income and a sliding scale. Currently, the average client receiving services under the Connecticut Statewide Respite Care Program has an annual income of around $20,000. If access to the state funded portion of the Connecticut Home Care Program for Elders is frozen as of SFY'10, it will likely result in an increase in applications for the Connecticut Statewide Respite Care Program.

In order to be able to most equitably serve the neediest clients, the Department proposes maintaining the current income and asset levels for SFY'10 and SFY'11 and does not support this bill's proposal to increase them and build in a permanent Social Security (COLA).”

DEB POLUN, Legislative Director, Connecticut Commission on Aging, testified: “The CT Commission on Aging supports this proposal to modernize the Alzheimer's Respite Care Program.

The proposal does three things: First, it updates the income and asset limits, which have not been changed in 11 years. Second, it allows the use of Personal Care Assistants to provide flexibility and self-direction in how individuals receive care. Finally, without increasing the program's funding, it allows individuals to receive more than the standard $3,500 in care in special circumstances.

More than 800 people in Connecticut accessed this important program last year and, with our changing demographics, it is estimated that the rate of Alzheimer's disease will increase over the next several years. Informal caregivers in Connecticut provide the majority of care, but they cannot do it alone. Providing care can be physically and emotionally challenging, and caregivers are best when they receive occasional breaks. Respite care also allows caregivers to go to work. The Alzheimer's Respite Care Program saves the state money by helping individuals with Alzheimer's disease remain at home (instead of going to institutions), and by helping their caregivers continue to provide their important support.”

NANCY SHAFFER, Long-Term Care Ombudsman, testified: “As a professional in long term

care for more than 20 years, I have worked with many Connecticut families as they

struggle with the numerous challenges encountered when a loved one is experiencing the

devastating effects of Alzheimer's disease.

We know that thousands of Connecticut residents and their families live with Alzheimer's disease or a related dementia, often with little to no help as they heroically try to manage on their own. Support for those who are afflicted with the disease and for their caregivers is not only the humane thing to do it is also a cost savings to the healthcare system and to the state. Statistically, caregivers are at high risk for numerous health problems. From emotional support to hands-on care, these individuals need the help of others in order to maintain the highest quality of life for themselves and their loved one. . . . The vast majority of caregivers do everything they possibly can to care for their loved one from one day to the next and to keep them at home for the longest time possible. Providing intermittent respite care for caretakers could mean the difference in keeping their loved one at home or in forcing the agonizing decision to place their loved one into institutional care. Respite care is an invaluable service which can truly save not only the caregiver's emotional and physical well being, but also prolong or eliminate the need for institutionalization.

It is my understanding that the income eligibility standards for the Alzheimer's Respite

Program have not been adjusted since the inception of the pilot program in 1997. It is time

to reevaluate these standards and update them to current criteria, to move from a

modest annual income limit of $30,000 to $41,000 or to liquid assets from $80,000 to $109,000 seems most appropriate after 12 years.

A stated goal of Connecticut government is to prevent individuals from inappropriate

nursing home placement and to ensure that individual's reside and receive care in the least

restrictive setting of their choice. The Alzheimer's Respite Care Services program helps

families to achieve that goal. The Program also helps to maintain the caregiver's own

health and safety. This is a win-win situation for Connecticut citizens and for the State of

Connecticut. I urge the legislature to provide this added support to families afflicted by

Alzheimer's disease.”

NATURE AND SOURCES OF SUPPORT:

CHRISTINE ANDREW, Board Member, Alzheimer's Association, Connecticut Chapter, testified: “Eleven years ago I and three other family caregivers sat around a table with other representatives of the Alzheimer's Association and discussed the tremendous stress upon family care givers and what we might do lessen the caregiving burden. Each of us was personally familiar with those burdens and the toll that they had taken upon our lives and our ability to care for our loved ones. Although I wasn't my father's hands-on caregiver, my daily presence kept his anxiety under control without the need for psychotropic drugs and ensured that my father received the quality of care that he so deserved.

Like so many other family caregivers, I had to struggle with the often conflicting demands of my own needs and those of my family member. I did not take a vacation during the last five years of my father's life and made a series of career choices based solely upon the effect that they would have upon my caregiving responsibilities; another of us had learned that the only way that she could get a full night's sleep was by renting a room in a motel while a paid caregiver stayed with her husband; a third had been forced to leave this distinguished body when her care giving responsibilities made it impossible for her to continue to serve as a legislator; the fourth had simply put her own life and needs on hold while she struggled with the conflicting demands of caring for her husband and functioning as a de facto single parent for their college-age children.

Each of us knew first hand that without a break from caregiving responsibilities, be it only for a few hours, even the most dedicated caregiver eventually reaches a breaking point. It was our shared awareness of the need for a safety net and the gaps in existing programs and services that gave birth to the legislation that created the Statewide Alzheimer's Respite Care program.

We recognized that there was a large segment of the caregiving population that lacked the resources to pay for needed respite care yet was too “affluent” to qualify for subsidized home care services. We were especially concerned about those individuals who were struggling to provide 24/7 care for a loved one with dementia while juggling the often competing and equally stressful demands of career and parenting responsibilities. Our objective was to create a program that would provide help for this underserved group of Connecticut citizens…commonly referred to as the “middle class”. We investigated respite programs in other states and proposed what we thought at the time to be appropriate asset and income criteria. The criteria that we proposed in February of 1998 – income of $30,000 or less and no more than $80,000 in liquid assets -- are still in effect today, more than eleven years later. Failure to adjust those figures has in effect slowly, but surely, eroded the effective reach of the Alzheimer's Respite Grant program and reduced the options available to the otherwise unserved Connecticut family caregivers that we sought to help.

SB 989 proposes a one-time corrective adjustment that translates the original financial criteria for the Alzheimer's Respite Grant program into their 2009 equivalents and provides for subsequent annual adjustments in order to avoid future erosion. While some might view this bill as an expansion of the statewide respite program, it is, in reality, simply a return to the original concept and objectives of this very important program.”

LAURIE BROWNE, Respite Care Manager, North Central Area Agency on Aging, testified: “The Respite care Program offers up to $3,500 for caregivers who are caring for someone with Alzheimer's disease or some type of dementia to allow the caregiver some respite, or some relief from caregiving. Adult day care and Home Health aide services are the most requested services among caregivers who apply for this program. Most clients are awarded the full $3,500 award and typically spend their full grant within 3 to 5 months. New proposed regulations in this bill to increase the grant size up to $7,500 after a demonstrated need is presented would help those caregivers in particularly challenging situations to continue to care for their loves ones at home.

Caregivers are under immense stress because they have to take care of their loved ones; themselves and sometimes they have children they have to take care of as well.

When I get calls from caregivers who are stressed out, physically tired and are looking for help, they are usually at the end of their rope. They are grateful for any help that is given. All they want it to be able to continue to take care of their loved ones at home. With the proper support, caregivers are helping to keep their loves ones at home and out of nursing homes. The Respite Care Program has been a vital source of support for caregivers in our region and they rely heavily on the grant to give them some respite a couple of months a year.”

NANCY LEONARD, Senior Director, Alzheimer's Association Connecticut Chapter, testified: “'I am here today in support of raised bill number 989. . . Currently in Connecticut there are approximately 70,000 residents living with Alzheimer's disease and related dementias, with over 112,000 caregivers. Seven out of every ten individuals with Alzheimer's disease and related dementias are cared for at home. The caregivers of our state are the unsung heroes. “The journey of Alzheimer's disease is like running a marathon that lasts about 20 years -- seven days a week, 365 days a year, 24 hours a day. Respite care is one of the tools to help the caregiver through the long, complicated journey. As many of you are aware, caregivers often struggle to meet the challenges of caring for a loved one with this disease. Three weeks ago, the Chapter's Helpline received a call late on a Friday afternoon about a family member who had been displaying combative behaviors in public. Exhaustion had overcome the family members, and it was a crisis situation. Our staff was able to work with the North Central Area Agency on Aging to secure respite funds and the gentleman was placed in a secured dementia unit for a few days to be evaluated. This gave the family members a break, knowing their loved one was in capable hands and a care plan was implemented so that the necessary supports were put in place to have the gentleman return home safely. It is an often common situation like this which demonstrates the reason why this program is so necessary.

The families and friends of the individuals with Alzheimer's disease and related dementia's want to help their loved ones. Today, we ask you to support the concepts highlighted in this bill which will make the program more effective:

● Add personal care assistant services as a care option in the program. As a former care manager, I understand that this would be a cost-effective option.

● Adopt regulations to provide up to $7,500 for services upon special case review. The grant size currently is at $3,500 and some complex cases in the program may warrant additional services.

● Adjust the income and asset eligibility criteria for this program, which has not changed since its inception in 1997.”

MARIA TOMASETTI, Regional Director, Alzheimer's Association of Connecticut, testified: “I have been working for the Alzheimer's Association for approximately three years. . . . I am also a former family caregiver for my mother, who had dementia of the Alzheimer's type.

The Connecticut Statewide Respite Care Program is funded by the state Dept. of “Social Services and is operated in partnership with the Alzheimer's Association CT Chapter and the Connecticut Area Agencies on Aging. The program currently pays for up to $3,500 in respite care services per eligible family, per year. Respite care provides a break, or a time of caregiver relief, from the constant physical and emotional stress of caring for a person with Alzheimer's disease or other forms of dementia. Eligible families may apply for daytime or overnight respite care services including: Adult day center care, home health aide, homemaker/companion, skilled nursing care, or a short-term inpatient facility stay.

The individual with dementia must meet income and asset eligibility requirements -- with income of no more than $30,000 a year and liquid assets of $80,000 or less.

As one of the primary caregivers for my mother who was diagnosed with Alzheimer's disease, I can speak first hand of the daily demands of care giving and the importance of getting a break from care giving responsibilities -- both for the caregiver and the person with dementia. Our family utilized personal care assistant services for 3 years on a private pay basis. The use of personal care assistant services -- for help with activities of daily living -- gave us the break we needed to continue to care effectively for mom at home. We were able to keep mom home because of these personal care assistant services.

Personal care assistant services are not inexpensive. The average cost of a personal care assistant is $13.80 an hour (gross). We were paying over $15 an hour. Families with income and/or assets slightly over the current state respite program limits would not be in a financial position to pay privately for needed respite care services, adding to caregiver stress.

Prior to my new role as the south central regional director, I coordinated the Alzheimer's Association Helpline services for approximately 2 years. I volunteered on the Helpline for nine months prior to joining the Association. During this time, I was able to refer many eligible family caregivers to our Connecticut Statewide Respite Care Program. These family caregivers, often tired and overwhelmed, were relieved and happy to learn about the possibility of a break from care giving responsibilities. While serving our Helpline clients, I encountered other family caregivers, equally tired and overwhelmed, who were initially hopeful about some respite care through the State Respite program and then disappointed and frustrated since their income and/or assets were slightly more than the program's eligibility guidelines. These families were not financially able to pay for needed respite care. There are other families in this same situation who are aware of the financial eligibility guidelines and simply do not inquire or apply.

Lastly, families are most appreciative of the $3,500 in respite care services per family, per year, which is currently allowed under the State Respite program. At the same time, the Area Agency on Aging Respite Care Managers work closely with families and are very aware of families with special needs who are in need of additional services. Some flexibility in the program maximum for these special situations can only increase the effectiveness of the state respite program. The Alzheimer's Association CT Chapter supports the following changes to the Alzheimer's Respite Care Program so the program can help the families it was designed to help:

● Increasing income and asset eligibility limits, which have not changed in 11 years, to reflect cost of living adjustments;

● Allowing flexibility to increase the respite grant maximum for families with special circumstances through regulation changes;

● Allowing use of personal care assistants as a respite care option.”

HEATHER SANDLER, Intern, Alzheimer's Association, Connecticut Chapter, testified: “Human Services Committee. My name is Heather Sandler and I am a graduate student at UCONN”s School of Social Work and an intern at the Alzheimer's Association of Connecticut as well as a Helpline volunteer.

I am here today to testify in support of Raised Bill No. 989, An Act Concerning the Alzheimer's Respite Care Program.

The Alzheimer's Association is a donor supported, non-profit organization serving the needs of families, health care professionals and those individuals who are affected with Alzheimer's disease and related dementias. The Association provides information and resources, support groups, education and training, and a 24 hour, 7 day a week Helpline.

Currently in Connecticut there are approximately 70,000 residents who have Alzheimer's and related dementias with over 113,000 caregivers. Those caregivers, usually family, provide over 97 million hours of unpaid care that would equal over a billion dollars. The Respite program allows many of these families the time they need to keep their loved one home.

As a graduate student in social work I have been able to research and study the Alzheimer's Respite program. In the course of studying this program I found that it allows more people to remain in their homes for a longer period of time. Allowing the use of Personal Care Assistant services would make the Respite program more flexible to more families. It is a cost-effective alternative to the current services covered in Respite, including home health aide, homemaker/companion, skilled nursing care or short term nursing care. A family using the Personal Care Assistant service will pay approximately $552 per week as compared to $950 a week for a skilled nursing facility, if the person is on Medicaid. Therefore, allowing the use of a Personal Care Assistant can provide a family with a longer period of Respite due to the cost savings. It will allow the average grant size of $3500 to provide approximately six weeks of Respite with Personal Care Assistant Services compared to three and a half weeks of Respite care in a skilled nursing facility.

The Alzheimer's Respite Grant is an important program to families coping with the emotional and physical stress they face everyday. The expansion of services to include Personal Care Assistants is paramount to keep these families from falling apart and their loved one being placed out of the home.

The Alzheimer's Association supports adding Personal Care Assistant services to the Alzheimer's Respite Care Program and Raised Bill 989.”

JOHN WHITCOMB, Caregiver, testified: I am here in the role of citizen, taxpayer and as a believer in limited government and fiscal control; also I am a supporter of the Alzheimer's Association.

My wife suffers from advanced early onset Alzheimer's disease. We are private payers, and not covered under Title XIX, although my wife is disabled under Social Security. We must pay out of our savings for the vast majority of my wife's care. It must come from money that had been planned for retirement living, and will radically affect our futures. It will particularly impact me, since I am expected to live longer and her care will likely use all of my life savings, making me dependent on the state, too.

Her health care also impacts my ability to have any serious gainful employment in a period that should have been peak earning and saving years.

When my wife is forced into nursing home care, our assets will be drained and the state will be faced with serious expenses. Respite care is one way to help delay that inevitability, and is FAR less expensive than the alternative. Raising the asset test as proposed is minimal. A caregiver knows a nursing home will easily use up $100,000 in assets a year. The asset level prescribed is lost money to the disabled person… it just comes down to “how long can nursing home admission be delayed”; which equates to both taxpayer savings and a better quality of life for the disabled.

Likewise, an increase in annual grant size would also save the state a considerable amount of money by permitting caregivers to further delay nursing home care.

It is also necessary to grant latitude for administratively determined special exceptions to the individual cap, within the budgetary authority. Again, good judgment can actually save expense.

This economic comparison doesn't even touch on health of the caregiver. Being a care-giver is very high stress. Health is certainly impacted, as is the caregiver's productivity, and ability to earn wages and pay taxes. We can expect short and long term health care cost ramifications. Since the limited nature of benefits also are likely to force the spouse into eventual dependence on the state, those costs also eventually become costs to the state.”

LINDA MARTIN, Caregiver, testified, “My mother, Lillian G. Payne, has been living through the mental and physical torments of Alzheimer's disease for the past five years. Three years ago, her states of confusion and fear associated with her condition necessitated my mother moving into our home to live with my husband, daughter and myself.

In June 2007 I contacted the Connecticut Chapter of the Alzheimer's Association to learn more about what we would be facing and options for caring for my mother. I read the information but took no action because I believed that we could provide for my mother's care both financially and socially. I retired from work with a plan of caring for my mother along with the assistance of other family members. In November 2009 I realized that the assistance was not as available as promised and our goal of ensuring that mom lives comfortably in her community was slipping out of our grasp and that we needed help with the financial burden of continuing her at the Adult Day Care Program she loves attending. The grant that we were awarded from the Alzheimer's Respite Care Program has extended my mother's specialized care while she continues to live at home and it affords me time to run errands, work at a part-time job and for a short period of time, it allows me to keep a major financial worry at bay.

I implore you to pass the bill to consider an increase the total grant size awarded through the Alzheimer's Respite Care Program from $3,500 to $7,500 per year for special circumstances to allow more service options.”

ELAINE ZANDRI of Orange, Caregiver, testified: “My husband and I are caregivers for my mother, who is 95 years old. He is with her during the day as he is retired and I work full time.

My Husband had a major heart attack a few years ago, and the stress of being with my Mom all day every day was taking a toll on our relationship as well as him. When I looked into what was available, I was introduced to the Respite Care Program. My Mom has been attending adult day care two days a week. Not only is my husband in better spirits as he now has some time to himself, but my Mom is a new person. It has opened her world to new people and she is excited to go and now has something to talk about and look forward to. The time she is allotted runs out in a week, and we are at a crossroads as to what we can do to keep her active in this program.

This Adult Day Program is absolutely wonderful. I wish I knew about it sooner, not only for our sanity but also for the new life it has given my Mom.”

TERESA HALL submitted testimony: “I am writing to you on behalf of myself and my mother, Agnes DelGiudice. My mother has been the primary caregiver of my father for the last seven years. He is now 83 years and in the late stages of Alzheimer's disease. She is now 75 years old and has given up her precious golden years, her hobbies, her health and her livelihood to provide the care my father requires. We struggled with several home care agencies and found out the hard way that are so many unqualified/untrained healthcare employees that really cannot handle or understand the extensive care, burden and frustration that comes along with caring for an Alzheimer's patient.

Being exhausted and depressed myself, with not being able to help my mother more with my father's care, I turned to the Alzheimer's Association for advice. On that day we learned about the respite fund. Once the fund became available for my mother, we looked into several options and decided we would try Adult Day Care three times a week for my Dad. The Adult Day Care has been a God Send for us.  The respite fund helped us finance a small portion of the enormous amount of cost we are financing for my father's care and medications. We would love to be able to take him there for four or five days a week. However, given today's economic conditions, the cost of living increase and the fact that Medicare or insurance does not cover anything for this long devastating disease, we are not able to do this. This is why we urge you to consider the proposed concept of regulations to provide up to $7500 in special situations and help the caregivers get a little more support which they so much need when caring for a sick loved one. The time my father spends at Adult Day Care, gives my mother some time to rest and recharge for a short while. For her these means taking a breather, a chance to just sit, run an errand or enjoy a cup of coffee.

We are thankful for this fund and as caregivers we strongly urge you to support the increase concerning the Alzheimer's Respite Care.”

NATURE AND SOURCES OF OPPOSITION:

None expressed

Reported by: Nancy V. Ahern

Date: March 23, 2009