ECEPA National Policy Model for Personal Assistance

From their combined personal experience with personal assistance policies in Europe, and with the help of co-funding from the European Union, ECEPA has compiled the following list of features that are indispensable for a policy that is to promote self-determination and full citizenship for persons with extensive disabilities. In order to encourage de-institutionalization the policy needs to be combined with a policy for general barrier-free residential construction.

Definition of a PA

Persons with extensive disabilities depend on assistance from others in the activities of daily living such as personal hygiene, eating, dressing, doing household work, assistance outside the home, at work and during leisure time, and, if applicable, in communicating, structuring the day or with similar intellectual and emotional support.

"Personal" assistance means that the individual user exercises the maximum control over how services are organized and is able to custom-design services according to his or her individual needs, capabilities, life circumstances, preferences and aspirations. In particular, personal assistance requires that the individual user decides:

Who is to work
At which tasks
At which times
Where and How

Thus, the individual user must be able to purchase services from a variety of service providers or to hire, train, schedule, supervise, and, if necessary, fire his or her assistants. Simply put, "personal assistance" means the user is boss or customer.

It is recognized that children and users with learning or psychiatric disabilities will need support from third persons with these functions.

Necessary features of a National Personal Assistance Policy Model

Eligibility
Needs assessment
Appeal procedure
Direct payments, not services in kind
Payments' amount independent of service provider
One central funding source
Payments for personal assistance as legal entitlement
100 percent coverage of personal assistance costs
Constant purchasing power of payments
Recipients are accountable for the use of Direct Payments

1. Eligibility

Eligibility must be granted:

solely on the basis of a person's need of practical or, if applicable, intellectual or emotional assistance by others in the activities of daily living, such as personal hygiene, eating, dressing, doing household work, assistance outside the home, at work and during leisure time, and, if applicable, in communicating, structuring the day or with similar intellectual and emotional support.
regardless of cause or medical diagnosis of one's disability, a person's age, employment or insurance situation.
regardless of income or property of the recipient or the recipient's household or family.

These features are to eliminate policies that currently discriminate on the basis of age, age at onset of disability insurance coverage, gender, medical diagnosis, or cause of disability.

They also reduce current disincentives to work, promote users' social and geographical mobility, liberate them from dependence on their families' financial situation and priorities, and reduce municipalities' costs which, in turn, improves their attitude towards their disabled inhabitants.

2. Needs Assessment

The needs assessment must:

take into account the person's current whole life situation and enable recipients to take their rightful place in family, neighborhood and society with all resulting duties and responsibilities including the culturally customary responsibilities within the family for household, care of small children or aging parents, assistance at the work place, during leisure time, outside the home, on travel and during vacations.
cover total assistance needs in all areas of one's life, not only a portion .
take into account the user's need, if applicable, of experienced and specialized assistants.
be expressed in the average number of assistance hours a month that a person needs and not in terms of one of several need categories.

Assistants work and get paid by the hour. For people who do not live in institutions (where workers are shared by residents) there is a direct link between needs and the number of hours assistants receive wages for.

3. Appeal Procedure

Clear, inexpensive and effective appeal procedures must be in place to challenge needs assessments, if necessary, in court.

4. Direct Payments, not services in kind

Cash benefits or Direct Payments are indispensable for users' self-determination. With the funds recipients must be able to purchase services from the providers of their choice and/or employ their assistants, including family members, themselves. Cash payments create a market with competing providers and turn users into customers who have a choice and can demand quality.

Services in kind rob users of choices by limiting them to - often monopolistic - service providers and by tying them to certain geographical areas - often buildings. Services in kind do not permit users to take responsibility for cost-efficient solutions. Cash benefits, on the other hand, enable individuals to custom design assistance solutions in accordance with their needs and preferences and give them an incentive to get the best services for their budgets. In brief, while services in kind make users more dependent, Direct Payments liberate them .

5. Payments' amount independent of service provider

Amounts are to be based solely on assistance needs and not on the service providers' identity. Persons who live in the community and employ their assistants themselves must receive payments in the same amount as if they lived in a residential institution or received community-based services.

This feature is intended to eliminate present market biases and inefficiencies caused by government agencies or other public bodies that favor institutionalization by paying higher rates for assistance services in institutions and community based services than to individuals who live in the community and employ their assistants themselves.

6. One central funding source

Under the policy one and the same national level funding agency has to cover all recipients and all their activities. Each recipient must not have more than one agency to deal with. In case several sources contribute, one of them is to be the guarantor for the other sources.

Funding from one central source promotes user's social and geographical mobility, liberates them from dependence on local governments' finances and priorities, reduces municipalities' costs for social welfare which, in turn, improves their attitude towards disabled residents. Dividing financial responsibility for assistance among several funders reduces users' control over their assistance and their daily lives and increases their administrative work and vulnerability through possible disputes among funders.

7. Payments for personal assistance as legal entitlement

Recipients must be legally entitled to receive payments for personal assistance irrespective of the funding body's financial situation. Legal entitlement reduces dependence on the national or local economic situation improves the user's' and the family's ability to make long-term plans and encourages de-institutionalization.

8. 100 percent coverage of personal assistance costs

In order to facilitate recruitment of personal assistants Direct Payments must cover all costs of employing a person including such costs as union wages, unsocial hours and over time, workers' social insurance, accident and liability insurance, pension, vacations, maternity leave, sick leave, training (if deemed necessary by the user); the costs of accompanying assistants around town (e.g. for food, entrance tickets, transportation) or when traveling (e.g. for airfare, hotel room, maintenance); payroll administration and audits. In order to enable users to reap the maximum benefits from Direct Payments for personal assistance, benefits must include the costs of user training and peer support.

If only direct and indirect wages were covered, it would be impossible for any entity, public or private, to provide assistance services without additional funding.

9. Constant purchasing power of payments

The level of cash benefits must be annually adjusted to avoid purchasing power losses and to guarantee that payments cover the full costs of the assessed number of assistance hours.

10. Recipients are accountable for the use of Direct Payments

Recipients must periodically account for use of funds - Periods should be 12 months or longer.

Experience shows that public payments without the condition of accountability will not fully cover needs. Without accountability politicians and civil servants seem to assume that users hire gray or black labor or relatives who work for less than market wages, Under these conditions it is impossible to build a sound image around personal assistance as a profession. Users will continue to depend on the charity of people who are willing to work without contracts, social insurance, accident or liability insurance, pension plans or decent wages.

Accounting for Direct Payments for personal assistance, on the other hand, should not involve an expensive administration. One solution is to require recipients to account for the number of hours their assistants worked by presenting signed time sheets. Accounting periods should be at least 12 months in length to permit recipients to save up or spend hours according to their varying needs over time.

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ECEPA National Policy Model for Personal Assistance