RESPITE CARE IN NEW JERSEY

MONDAY, APRIL 16, 1990

U.S. SENATE,

SPECIAL COMMITTEE ON AGING,
Lakewood, NJ.

The committee met, pursuant to notice, at 11:15 a.m., at Barton Hall, Leisure Village East, Dumbarton Drive, Lakewood, NJ. Hon. Bill Bradley (acting chairman of the committee) presiding.

Present: Senator Bradley.

MS. FORD. I want to welcome you all here today on behalf of Senator Bradley and his Aging Committee. We are very pleased to have him in Lakewood.

For those of you whom I haven't met personally, I am Assemblywoman Marlene Lynch Ford, and I represent this district in Trenton. In Ocean County, and in the 10th District in particular, Senator Bradley has one of the highest percentages of people who are in their older years-I won't call them senior citizens, but they are older Americans and they are in need of the services that are the subject of this committee hearing.

I can't thank you enough for bringing the Senate Aging Committee to Ocean County and to Lakewood. I want to welcome you on behalf of the citizens here. Thank you for coming down here and listening to what we have to say.

It is good to see you again.

OPENING STATEMENT BY SENATOR BILL BRADLEY

Senator BRADLEY. Well, let me thank Assemblywoman Ford for her courtesy in coming today to introduce me and welcome me to Leisure Village.

The Committee will come to order. This is a hearing of the Senate Special Committee on Aging, and I particularly want to express my appreciation to the trustees of Leisure Village for allowing us to hold the hearing here today. I also want to express my appreciation to all those who have been willing to come forward and testify, and I want to welcome all those who are in attendance for the hearing today.

We are aging in America. In New Jersey we can not only see the seriousness of the problem for older and disabled people and their families, but we can also find some of the most innovative and effective programs in America right here in New Jersey, responding to the problems of the elderly.

Today I have asked the Senate Aging Committee to solicit testimony about the New Jersey Respite Care Pilot Project. It is a small

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project by standards of the Federal Government, but it has helped a great many people and has been very special to me personally. When I joined the Senate Aging Committee in 1979, about 1 in every 10 Americans was over the age of 65. Twenty years from now it will be 1 out of every seven Americans. Some of our greatest medical successes have prolonged and improved the quality of life for our aging and disabled citizens. Their successes have also brought us new challenges to find ways to meet the needs of an older, sometimes frailer population which has fewer young people available to care for it.

Too often when people think of the aging population, the image that comes to mind is of nursing homes that are overcrowded and understaffed. Although the ranks of the institutionalized elderly and disabled are growing, nursing homes are only a small piece of the solution to the puzzle of long-term care. Four out of five Americans with physical or mental disabilities are cared for by family members at home. Through the years I have grown increasingly sensitive to the value of this informal network of loving family caregivers. I see it as the backbone of every community's effort to offer humane and dignified care for its frail citizens. If we as a Nation are to have any effective long-term care strategy—and I hope that we do develop such a strategy soon-it will have to be built on and support this valuable family network.

The New Jersey Respite Care Pilot Project shows us the way to build on the family network, which is why I pushed so hard to first pass the legislation establishing the project, and then again, nearly 2 years later, to make sure that it was implemented.

The Pilot Project was originally funded for 4 years in 1986 and was intended to serve as a resource for the citizens of this State and as a blueprint for other cost-effective, humane programs that would back up the efforts of family caregivers. Since the program formally opened its doors in April 1988 I have heard many touching stories of its support for caregivers. One 82-year-old caregiver was permitted, because of this program, a week of care for her 103year-old mother so that she could attend her granddaughter's wedding in California. A woman with Alzheimer's Disease received interim care while her husband was hospitalized for surgery. These stories have reinforced my feeling that such services can make a tremendous difference for strong, supportive families that occasionally need some help in carrying on what the burdens of caring for dependent family members.

I asked the Aging Committee to sponsor this hearing so that the Senate could learn more about how the program is working for those who depend on its help and for those dedicated professionals charged with providing the services. Federal funding for the Respite Care Pilot Project is scheduled to expire this year. I want to continue funding the program for two reasons. First, the nearly 2,000 families helped each year in New Jersey need its services. Second, it is a pilot program that deserves a full 4 years of operation so that we can thoroughly evaluate its benefits, as well as any drawbacks it might have, and make changes and push for national implementation.

I would like to establish similar programs for elderly and disabled people and their families in the rest of the Nation because I

am convinced that respite care, along with home health benefits and adult day care, forms the nucleus of a humane approach to long-term care.

I come today to hear whether these programs are practical, what we have learned about implementing them and how they are working.

I thank everyone who has agreed to be a witness today. We have three panels.

Before we begin with our first panel I want to welcome to the Senate Aging Committee Jane Maloney, who is Confidential Aide to the Ocean County Office on Aging, and she will read a statement for Phil Rubenstein, Executive Director, Ocean County Office on Aging.

So, Ms. Maloney, welcome to the committee. The floor is yours. STATEMENT OF PHILIP RUBENSTEIN, EXECUTIVE DIRECTOR, OCEAN COUNTY OFFICE ON AGING, AS READ BY D. JANE MALONEY, CONFIDENTIAL AIDE

Ms. MALONEY. Thank you, Senator Bradley. I apologize for these people who expected to hear Mr. Rubenstein today. He is celebrating the Passover holiday. He is very saddened that he cannot be here with you.

The Respite Care bill that Senator Bradley has introduced recognizes that caregivers require care, too. Sometimes we ask ourselves, who are the caregivers? The caregivers are mothers, fathers, brothers, sisters, sons and daughters, grandchildren, nieces, nephews, those people who do have their own identities, their own dreams, and their own needs.

We know that the chronically ill experience a vast range of loss due to physical and mental limitations. The caregivers experience similar losses, but we don't always recognize those losses. The proposed legislation recognizes not only the caregivers' losses but the around-the-clock struggle of the pressures of caregiving.

Shortly we will hear testimony from service providers and from the caregivers themselves regarding the critical need to continue the pilot program here in New Jersey. I am very confident that Senator Bradley will take these caregiver stories back to Washington and that he will encourage his colleagues to listen to this testimony and to address these needs.

Senator Bradley, thank you very much for returning to Ocean County, and thank you for your continued support, your involvement, your participation for the needs of the chronically ill and their families within Ocean County.

Senator BRADLEY. Thank you very much.

This is an official hearing of the Senate Committee on Aging, and if you would, please, refrain from applauding during the course of the hearing. This is an information-gathering effort. We would prefer that you abide by the basic rules of the Senate during the hearing. It is a public meeting. Everybody is permitted to attend, but at the same time, it is pursuant to certain rules, and one is that applause-unless it is a particularly important moment, and we will say that is the case with Ms. Maloney-we would hope that you would refrain from applause.

Let me thank Jane Maloney for her testimony. Please give my regards to Phil Rubenstein and tell him I hope he will be able to visit with us next time we are in Ocean County. And I thank you for your comments.

Our first panel consists of Bill Anderson, who is husband and caregiver of Charlotte Anderson; Meredith Wagenblast, who is caregiver of her mother, Beatrice Newbon; Margaret Bodrucki, who is mother and caregiver of daughter Cheryl; and Ann Ferrugiaro, who is the daughter and caregiver of her mother, Katherine.

Let me welcome all four of you to the committee today. Each of you has participated in the New Jersey Respite Care Pilot Project. Each of you have your own personal stories as to what the project has meant to you and your family members, and the committee and the record-which we will take back to the Senate-should reflect the actual life stories of caregivers who have participated in this program. That's why I have asked you to testify. If you could give your testimony, then I will ask questions.

So why don't we begin with Mr. Anderson and proceed right down the line to Ms. Wagenblast and Margaret Bodrucki, and then Ann Ferrugiaro.

Welcome, Mr. Anderson, to the committee. Please feel free to tell us your story and the story of Charlotte Anderson.

STATEMENT OF BILL ANDERSON, HUSBAND AND CAREGIVER OF CHARLOTTE ANDERSON

Mr. ANDERSON. Senator Bradley, I am glad to be here.

I certainly didn't expect to be here today. I am a neophyte with the Respite Program.

My wife has recently been afflicted with Amyotrophic Lateral Sclerosis. It is commonly known as Lou Gehrig's Disease. Her response is "Why me? I can't play baseball."

I don't know if you are familiar with the disease, but it atrophies the muscles in the body and as a result she has lost the ability to walk or stand. She is confined to a wheelchair and requires constant help with many things such as dressing, bathing and use of the toilet to name a few.

Since she has become an invalid all the household chores she formerly performed have been passed on to me. In addition to these tasks, the daily care of my wife and her many needs have become the center of my attention. Needless to say, an enormous amount of time and energy is consumed performing this job.

In early April 1990, I was enrolled in the Ocean County Respite Program at Independence Place in Whiting, NJ. Presently, my wife attends this adult day care center for a 5-hour period once a week. In the limited time I have been associated with this program, I have found it very beneficial to do some time consuming things that I previously had to ignore. This is a program that is very much appreciated by people who have been thrust into positions that are very difficult with which to cope.

In fact, if it weren't for the program I couldn't be here today.

I think the program is very, very important to people with my needs. That's about all I can say, because I am so new to the program.

Thank you.

Senator BRADLEY. Mr. Anderson, thank you very much for offering your testimony. I'm glad the program exists so that we could hear your testimony today. I will ask you a few questions in a few minutes.

Meredith Wagenblast.

STATEMENT OF MS. MEREDITH WAGENBLAST, CAREGIVER FOR MOTHER, BEATRICE NEWBON

Ms. WAGENBLAST. It is certainly an honor for me to be here today. I think the reason that Barbara Wolfson from the Ocean County Board of Social Services, who introduced me to the Statewide Respite Program, asked me to come is that I represent a group of individuals who have been given the nickname, "Sandwich Caregivers." These are normally people in their thirties or early forties who have young children to care for and elderly and ill parents to care for at the same time.

In my particular case, I have three children who are here with me today, over in the front row over there, and my mother, who is 79 and a victim of Alzheimer's Disease.

I first became aware of programs like Statewide Respite 3 years ago when I attended a caregivers meeting sponsored by the Ocean County Board of Social Services. At this time I met Barbara Wolfson. My mother had just recently been diagnosed as having Alzheimer's, and I had attended the meeting hoping to get some good tips about how to better care for her or how to help her remember things. What I found was something entirely different, that shocked me at the time. Instead of necessarily just seeking information on how to help the patients, this group of people was desperately meeting together to help ease the burden that each one was feeling, the toll that Alzheimer's takes on the loved ones.

This was something that I found difficult to understand at the time because my mother wasn't in that situation. When I casually mentioned that I would, of course, be having my mother move in with us when the time came, the group unanimously rejected that idea and said that it would never work, that it would be too damaging to my family, to my children, and that it wouldn't be possible. So I left there at the time thinking that this group wasn't for me and that I really didn't need these programs. But now, 3 years later, things have changed considerably. For the past 2 years my mother has lived with us. And thanks to the support of my husband, who arranged to have an addition put on our first floor for my mother, I have been able to keep her with us. However, she has experienced a steady deterioration to the point that now she often forgets who I am, is hard pressed to think of who she is, and has the total loss of all abilities, including getting a drink of water. This doesn't mean she can't enjoy socializing with people because she can, but as far as functioning on any kind of an independent basis, she is unable to do that.

Naturally, the problem for me comes in that I have the three children, who have a very active life. They play on six different athletic teams. We have many church activities and scouting and so forth, all the typical things that children are involved in.