So I would say that more accurate diagnosis by the doctor and more strenuous and active participation should be put on rehabilitating the patient and getting them out of the nursing home as quickly as possible.

[The prepared statement of Joyce Lile follows:]

PREPARED STATEMENT OF JOYCE LILE, PRESIDENT, CITIZENS FOR BETTER NURSING HOME CARE, SANTA CRUZ, CALIF.

On Mother's Day, May, 1974, Esther fell and fractured her pelvis. We asked the doctor to admit her to a hospital and we were told that we would probably have to pay for the room and tests since the Hospital Review Board would rule that a patient with just a fractured pelvis was not eligible for Medicare payment. After 10 days with her daughter Esther was transferred to a so called "nursing home" (we found out later the home was operating as a skilled nursing facility and yet was not licensed for it). After a period of approximately twenty-one days Esther was moved to a 55 bed skilled nursing facility on June 12, 1974, at the family and doctor's request because unauthorized personnel and the owner were trying to give the same medication to her. When she was admitted she was non-ambulatory, confused, and declared "mentally incompetent." (see attached statement-Note #24 is inaccurate-the pelvis was not healed at that time). As the weeks went by she began to have hallucinations and became extremely depressed. The family asked the staff why this was happening to a person who had been alert and active only a few months ago, and only had a fractured pelvis. No logical answers were given by the staff or the doctor.

In the fall of 1974 Esther was again transferred to a smaller facility with 25 beds away from the confusion of the downtown traffic and the helicopters which Esther said were coming with a message from her pastor. The medication remained relatively the same, Capla, Valium, Elavil, and Placidyl. We asked if this medication was usually given to the patients and the Director of Nurses said she was on "maintenance." We asked the doctor to consider giving her less medication.

In March, 1975, Esther was moved to a Residential Care home after the doctor agreed she was making progress. The family went to visit regularly and each time found the house cold. We called "Licensing" and they came out unannounced and verified that the heat was not kept at an acceptable temperature. Several days later Esther fell in the bathroom and also vomited. The doctor checked her over but could not find anything except a back injury from the fall. At the end of March Esther was moved to another "Residential Care" home. On March 27, the woman in charge called and said that Esther was unable to undress herself, slow in responding to questions, could not walk steadily, and collapsed on her bed. We called the hospital and she was given various tests over a period of two days, but the doctor again did not say it was from an overdose of drugs. He did admit later, verbally, that it could have been the cause of symptoms.

On March 31, 1975 Esther was admitted to Cabrillo Manor, an intermediate care facility, because the doctor felt she would have better supervision there. At that time almost all medication was withdrawn except for 15mg of Dalmane and the doctor became overly cautious regarding any medication which he gave her. This resulted in symptoms similar to drug withdrawal. After one day in the Manor the Dir. of Nurses told her she was not well enough to function in that type of a facility. Esther was returned to the Residential Care home. In late June, 1975, Esther discovered the owner of the facility gave her another patients medication by mistake and mentioned it to the owner. The family then decided she was alert enough to return to her own home where her grandson and her daughter could help her. Today Esther lives in a retirement village and participates in church activities, helps in a health clinic, works on getting a local newspaper, and is an active member of Citizens for Better Nursing Home Care. She was also a member of a committee that conducted a study on the feasibility of having a local “Day Care Center" here in Santa Cruz.

We feel that the experiences Esther has been through, as difficult as they were, helped make her more interested in taking responsibility for her own health care and also to realize that there are times when it is better to seek a second opinion regarding a doctor diagnosis.

EXAMINATION FOR HOUSEBOUND STATUS OR NEED FOR REGULAR AID AND ATTENDANCE

The purpose of this examination is to record manifestations and findings pertinent to the question of whether the claimant is housebound or in need of the regular aid and attendance of another person. Findings should be recorded to show whether the claimant is blind or bedridden. The report should be in sufficient detail to:. determine whether there is disease or injury producing physical or mental impairment, loss of coordination or enfeeblement affecting ability to dress and undress, to feed himself, to attend to the wants of nature and keep himself ordinarily clean and presentable.

In either instance, whether the claimant is claiming housebound or aid and attendance benefits, the report should reflect how well the individual ambulates, where he goes and what he is able to do during a typical day.

12. INDIVIDUAL'S COMPLAINT Initially pain in pelvis and inability to walk due to pelvic fracture; presently pt. is confused and mentally incompetent

23. DESCRIBE RESTRICTIONS OF EACH UPPER EXTREMITY WITH PARTICULAR REFERENCE TO GRIP, FINE MOVEMENTS, AND ABILITY TO FEED HIMSELF, BUTTON CLOTHING, SHAVE AND ATTEND TO THE NEEDS OF NATURE.

No restrictions of upper extremities

24. DESCRIBE RESTRICTIONS OF EACH LOWER EXTREMITY WITH PARTICULAR REFERENCE TO EXTENT OF LIMITATION OF MOTION, ATROPHY CON TRACTURES OR OTHER INTERFERENCE. IP INDICATED, COMMENT SPECIFICALLY ON WEIGHT BEARING, BALANCE AND PROPULSION OF EACH LOWER EXTREMITY.

Pt. had restriction in motion of left hip due to pelvic fracture causing pain, and thus was unable to walk, but fracture now healed and has no restriction in legs.

EXTREMITIES AND SPINE (Continued)

25. DESCRIBE RESTRICTION OF THE SPINE, TRUNK AND NECK

No restrictions

28. SET FORTH ALL OTHER PATHOLOGY INCLUDING THE EFFECTS OF ADVANCING AGE, SUCH AS DIZZINESS, LOSS OF MEMORY, POOR BALANCE WHICH AFFECTS CLAIMANT'S ABILITY TO PERFORM SELF-CARE, AMBULATE OR TRAVEL BEYOND THE PREMISES OF HIS HOME OR IF HOSPITALIZED BEYOND THE WARD OR CLINICAL AREA. DESCRIBE WHERE HE GOES AND WHAT HE DOES DURING A TYPICAL DAY. (Use additional), 094 |! napagaary)

Pt. is confused, mentally incompetent, and at times paranoid, along with mild anxiety depressive reaction, thus requiring hospitalization on continuing basis. She is thus hospitalized in the Garden Convalescent Hosp. here in Santa Cruz. Pt. also has cerebrovascular vascular insufficiency which causes intermittent dizziness and at times ataxic gait. She requires close supervision, and thus is not capable of being left alone.

METHOD OF AMBULATION

27. IS HE ABLE TO WALK WITHOUT THE ASSISTANCE OF ANOTHER PERSONT

At time of admission to the convalescent hosp., she was not ambulatory at all due to pelvic fracture

YES

NO distance)

BLOCK or less OR BLOCKS

IMILE

OTHER

(Specify distance)

23. DESCRIBE HOW OFTEN PER DAY OR WEEK AND UNDER WHAT CIRCUMSTANCES HE IS ABLE TO LEAVE HIS HOME OR IMMEDIATE PREMISES

Never

23. ARE AIDS SUCH AS CANE, BRACES, CRUTCHES OR WALKER REQUIRED FOR LOCOMOTION? ({{ so, specify and describe effecti that can be traveled as in Item 27 above.)

No

10: ADDITIONAL REMARKS

Pt. now requiring continued hospitalization because of chronic brain syndrome

The CHAIRMAN. Thank you very much, Mrs. Lile.

Mrs. Summer, we will be glad to have your statement. Again, I want to commend you on your excellent statement this morning on ABC. Go right ahead. Would you pull the microphone up closer, please.

STATEMENT OF ARLENE SUMMER, ATLANTA, GA.

Mrs. SUMMER. I would like to say how happy I am to be in Washington to tell my story because we almost lost my father and as a result my efforts were blocked in doing anything about it. So I am happy to be here and I feel glad that I can give this testimony to you people who are in a position to do something. In June 1977 my parents, Thomas L. and Idell Lawson entered the Buford Nursing Home in Buford, Ga. At the time they were 80 and 81 years old, respectively. Their residence at this facility was not without its problems, both physical and emotional, as I will describe briefly.

My mother's health had begun to decline seriously to the point where it was necessary for full-time care to be obtained for her. My father developed severe nervous problems brought about by concern for mother and too much confinement. They had also begun over the past few years to develop a dependence on medication that we children felt excessive.

At one point my mother suffered a rash over her body which the treating dermatologist in Marietta determined to be brought about by too many different drugs. When her medication was changed and cut down, she showed rapid improvement.

At any rate, in the interest of time, I will not go into further detail except to say that I did feel there remained a tendency among the medical staff at Buford to overmedicate. In all fairness, however, we found the attendant doctor willing to take into consideration the feeling of all the children in determining the care our parents were receiving. After all we certainly were much closer to the problem and perhaps had a keener awareness of the changes taking place in our parents.

It should be kept in mind that after a thorough examination, my father's general physical condition was very good, with the exception of bouts of diverticulosis stemming from his poor nervous and emotional state. Medical records are available at the facilities where my parents received care and hopefully I could furnish them to you in more detail.

In October 1979, because of convenience to his home and work, the rising price of gasoline and so forth, my brother wanted my parents moved to the Gainesville Care Center. This was when an already bad situation became worse.

At the time of the move, Dr. Richard Stewart was chosen as my parent's physician. He immediately increased the dosage of medication for my father and within a couple of days he was almost immobile.

When I asked the doctor the reason for this, he told me rather tartly that "he was the doctor and if I didn't like it, I could get myself another doctor." Through my experience, getting doctors for patients in nursing homes is very difficult. They just don't want to go there. Even the family physician who treated my parents for 15