Clarifying the Definition of Personal Care

Findings on the Purchase of Goods and Services under the Cash and Counseling Demonstration and Evaluation Cash Option in

Arkansas and New Jersey

Mark R. Meiners, Ph.D., Dawn M. Loughlin, Ph.D, Michele D.Sadler, MPH

University of Maryland Center on Agingwww.umd.edu/AGING

Presented at The Gerontological Society of America Annual Scientific

MeetingNovember 22, 2003

San Diego, CA

The CCDE Cash Option

The amount of the monthly allowance was determined by the number of personal assistance hours in the client’s existing care plan, or for new clients, the number of hours in the care plan as determined by enrollment nurses.

Consumer-directed clients could hire whomever they wanted for their personal assistance, with the exception of the person acting as their program representative (and with the exception of spouses in Arkansas.)

Clients could choose to use all or part of their monthly benefit for human assistance services. Any funds not expended for human assistance services could be used to purchase personal care goods and services to substitute for human assistance.

Purpose of the study

Identify how clients obtain and use equipment, goods, and services under the cash option.

Identify a broader range of types of equipment, goods, and services that may substitute for personal care

Identify and explore the costs and benefits associated with substitution of equipment, good, and services for personal care.

Identify the ways in which substitution of equipment, goods, and services prescribed in cash option care plans has reduced or may reduce reliance on personal care.

Data Sources

Arkansas (n = 887) and New Jersey (n = 878) CCDE cash option baseline surveys

Arkansas (n = 657) and New Jersey (n = 570) CCDE cash option participating consumer 9 month surveys

Fiscal intermediary records of New Jersey CCDE cash option participants (n=556) May, 2000- November, 2002

Consumer and consultant focus groups in Arkansas and New Jersey – Spring and Summer 2003

Interviews with program staff in Arkansas and New Jersey 2002-2003

Purchasing equipment, goods, and services under the CCDE cash option

Purchasing goods and services under the CCDE -- typical steps for the consumer.

Consult with a program consultant to ensure that the anticipated purchase is intended to substitute for human assistance or to increase independence.

Enter purchase into the cash management plan, to be approved by the consultant, and in some cases, approved by the state program office.

Accumulate funds toward the item. If funds are already available the consumer could purchase the item and submit a receipt, or could request a check in advance made to a specific vendor.

Some equipment, goods, and services purchased under the cash option in New Jersey

Examples of items purchased by consumers (letters A-B)

1996 Ford/1993 Chevy 3 walls in bathroom Adjustment table Adult diaper Adult under pads Advertisements Agency service Air conditioner Air purifier Ankle braces Arthritis cream

Bandages Bank fee Bath bench Bath chair Bathroom modifications Beauty salon Bed Bed lift Bed sore cream Beeper Big button phone Blender Blood pressure monitor Boost Plus Box spring and mattress Brace repair Brush head refills

Categories and frequencies of equipment, goods, and services purchased by New Jersey consumers under the cash option

Number and percent of consumers who purchased:

Transportation 258 46%

Laundry service 206 37%

Insurance 202 36%

Small kitchen appliances 57 10%

Small appliances - general 53 10%

Pharmaceutical supplies 48 9%

Durable medical equipment/furniture 47 9%

Prepared food 44 8%

Categories and frequencies of equipment, goods, and services purchased by New Jersey consumers under the cash option(con’t)

Number and percent of consumers who purchased:

Large Appliances 41 7%

Shopping and errands 40 7%

Home modification 33 6%

Agency worker or aid service 28 5%

Grooming service and supplies 22 4%

Housecleaning 21 4%

Computer equipment and supplies 13 2%

Categories and frequencies of equipment, goods, and services purchased by New Jersey consumers under the cash option (con’t)

Purchases made by < 2% of New Jersey consumers with CCDE funds:

Telephone equipment and service

Outside chore service

Vehicle purchase or modification

Massage or therapy

Postal and office supplies

Moving expense

News Ads

Exercise equipment

Personal alarm system

Small equipment for self-help

Costs and benefits of purchase of equipment goods and services

Costs: The CCDE cash option is zero-sum. Under the CCDE cash

option, a consumer who makes a purchase with CCDE funds will receive fewer hours of paid assistance than a comparable consumer who spends his/her entire budget on human assistance.

It is the consumer who makes the decision as to whether the immediate cost to the consumer (in waived personal assistance) is equal to the immediate or long term benefit to the consumer.

No focus group participants reported going without needed care to obtain equipment or services.

Costs and benefits of purchase of equipment goods and services.

Benefits:

Focus groups participants reported that the items and services they purchased increased their comfort, safety, mobility, ability to perform tasks and independence

“ I had a lift installed in my van, so I can be independent.” (Arkansas consumer)

“[A computer]…aids your mobility; you can contact other people, converse with other people on it, pay bills and stuff like that” (New Jersey consumer)

Costs and benefits of purchase of equipment goods and services.

Additional program benefits reported by consumers and staff:

Consumer choice: The right item for the consumer

“The type of vacuum cleaner that they purchased was something easy for them to maneuver”. (New Jersey Consultant)

Costs and benefits of purchase of equipment goods and services.

Additional program benefits reported by consumers and staff:

Fiscal responsibility: Consumers given control of their budgets could and did shop for the best deal available.

“I went shopping and compared the prices of the computers and I got the model and the number and I submitted it …”. (New Jersey Consumer)

Costs and benefits of purchase of equipment goods and services.

Additional program benefits reported by consumers and staff:

Maximizing the budget: Some consumers went beyond shopping for the best deal and provided their own or another’s labor to supplement the value of the purchase.

“I got a ramp for my wheelchair. My son didn’t charge me the labor.” (Arkansas consumer)

Costs and benefits of purchase of equipment goods and services.

Additional program benefits reported by consumers and staff:

Maximizing available unpaid help: Survey findings indicated strong associations between unpaid help (received by the majority of consumers) and the purchase of equipment goods, and services of all types. Equipment that increases the comfort, safety and well-being of unpaid caregivers may provide respite for primary paid and unpaid caregivers as well as encourage the retention of unpaid caregivers.

“my daughter takes my mother to church and I give her money for gas” (New Jersey representative)

Additional survey findings

Consumers in both states increased their rate of purchase of equipment for personal activities under the cash option

Consumers in Arkansas significantly decreased the gap between White and Black consumers’ rates of purchasing equipment for personal activities.

Comparison of consumer purchases (from all sources) before and during the CCDE cash option: The CCDE cash option increased the rate of purchase of equipment for personal activities

Arkansas CCDE Cash option group

Purchases in year prior to baseline

Modified a home 234 36%Modified or purchased a vehicle 34 5% Equipment for personal activities 196 30%

Purchases 1st 9 mos. of CCDE

Modified a home 188 29%Modified or purchased a vehicle 25 4%Equipment for personal activities 253 39%

Comparison of consumer purchases (from all sources) before and during the CCDE cash option: The rate of purchase of equipment for personal activities increased during the CCDE.

New Jersey CCDE Cash option group

Purchases in year prior to baseline

Modified a home 112 20%Modified or purchased a vehicle 36 6% Equipment for personal activities 176 31%

Purchases 1st 9 mos. of CCDE

Modified a home 82 14%Modified or purchased a vehicle 20 4%Equipment for personal activities 203 36%

Comparison of consumer purchases before and during the CCDE cash option (from all sources) for Black vs. Non-Black consumers: The gap between rates of purchase of equipment for personal activities significantly decreased in Arkansas during the CCDE cash option .

Arkansas CCDE cash option group

% of Black % of Non-Black

Purchases in year prior to baselineModified a home 33% 37%Modified or purchased a vehicle 5% 5% Equipment for personal activities 23% 34% **

Purchases 1st 9 mos. of CCDEModified a home 25% 31%Modified or purchased a vehicle 3% 4%Equipment for personal activities 36% 40%

Preliminary Insights: Cash Flexibility Supports Creativity In Personal Care

• Cash option broadens choice beyond human assistance related personal capitation

• Choice gives flexibility: who, what, when, where, why, and how much to pay

• Purchase of equipment, goods, and services depends largely on program generosity, residual funds, and savings strategies

• EGS purchases involve trade-off with paying family caregiver

• Miscellaneous fund for small purchases is valuable option

• Rainy day savings option should be considered

Conclusion: Interest and expertise in personal care related equipment, goods, and services is evolving

“… just by talking to them and informing them about the program, I get a sense of what kind of things they are in need of so that I can make suggestions and if they think of something I advise them to put it on the plan, if it’s something that will make them more independent…”