I. Advocates Guide on making Money Follows the Person (MFP) a reality in your state
II. Empowering Service Delivery (ESD)
III. Components of Agency Delivered Consumer Directed Services
IV. ADAPT Definition of Consumer Direction
V. Agency with Choice Model
 
I. GUIDE
 

There are some new policy developments and information sources that increases our opportunities now to get our states to implement a State Money Follow the Person concept.  Implementing this policy today will be a good foundation for when the Federal Money Follows the Person Demonstration starts flowing and has shown to be a cost effective way to get folks out of nursing homes today.  For those in the IL movement it will a head start for when the 5th Core Service becomes a reality.
 
What is State MFP?
 
For this advocacy campaign State Money Follows the Person (SMFP) is a state policy that allows a person in a nursing home who chooses to leave the facility, to have the Medicaid funding that is currently funding their nursing home services, transferred to purchase Medicaid community based services such as personal care, home health or home and community waiver services.
 
It should not be confused with consumer control/self determination which is a different concept.  Consumer control/self determination  allows individuals to have more control in the purchasing of services once they are in a community based program.  SMFP is the funding mechanism to allow the person to move to the community.
 
Your state is already spending state and federal money on the person in the nursing home (Medicaid).  All a State Money Follows the Person policy does is direct the state to move that money from the nursing home budget to a community based program budget to fund the community services for the individual who has chosen to leave the nursing facility.  Think of State Money Follows the Person as moving money from your left pocket to your right pocket.  
 

The reason this will be attractive for the state to do, is that they can partially comply with the Olmstead decision, by moving folks out of nursing homes without expending any new money.  In these tight budget times this can be couched as a win-win situation for us and for them since community services are less expensive than nursing home services.

Community based organizations are the key to making a request to leave a nursing facility, a reality.  A State Money Follows the Person policy is the critical policy to get need community services funded.

The hard work is the transitioning of the individual from the nursing home to the community.

All advocacy campaigns start with the first step.  Below is some information you will need to get your state to implement a SMFP policy.

ADAPT can assist in this campaign by providing information.

1.  CMS Medicaid Directors letter on Money Follows the Person;

2.  Number of people in nursing homes who may want to leave

     using those who answered yes on question Q1a of the Minimum  

     Data Survey (MDS) AS A STARTING POINT;  

3.  CMS letter on getting/using MDS information

4.  CMS process for getting a Data Use Agreement;

5.  Funding for identification/service coordination;

6.  Nursing home occupancy rate;

7.  Names of Medicaid community based programs in your state;

8.  Names of states already doing ?State Money Follows the Person?  

     (Bureaucrats like to talk to other bureaucrats)

Advocacy Strategies

1. Some states have already implemented a SMFP policy. (Texas, Kansas, Maryland are just a few).  Some have done by passing legislation, some through rulemaking and others through their budget process.

 
2. Work with your Protection and Advocacy (P&A) organization in your state.  PAIR and DD funding can assist in legal advocacy for getting folks out of nursing homes.

3. Work with the aging network in your state. AARP and the Area Agencies on Aging should have similar goals to get folks out of nursing homes.

4. Set up meeting with your state Medicaid Director and propose an MFP program.

5. Develop an MFP bill.  (There are many models available)

6. Develop an MFP coalition to push for the rule and/or legislation.

7. Research number of folks on waiting lists for community services. 

-Nursing home vacancy rate, MDS Q1a numbers. 

-Cost of nursing home bed per year. 

-Cost of waiver per year.

For info:  The ADAPT Community   512/442-0252

 
II. EMPOWERING SERVICE DELIVERY (ESD)

Since the beginning of the independent living movement there has been an ongoing debate about the role of the Independent Living Centers, ILCs, in the provision of services.  Some are adamant that the provision of services will corrupt the advocacy role, which is a core component of an ILC.  Others believe that by providing services ILCs can become integrally involved with people in the community, build a network of grassroots advocates for services, fill a critical gap in existing services by including the IL principles in service provision, become more knowledgeable about the service system and educate themselves for more effective systems advocacy.

Empowering Service Delivery (ESD) is a model for delivering services that attempts to get beyond the services vs. advocacy debate.  Its goal is to give people with disabilities more control of the service delivery system by instilling the IL principles into the delivery system.

EMPOWERING SERVICE DELIVERY

1.     Organizations run by people with disabilities

        taking control of the service delivery system.

2.     Putting the independent living principles

        of choice and control into the delivery system.

3.     Changing the traditional, paternalistic and/or

        medical model of delivering services.

BENEFITS

1.     Direct contact with individuals who need services.

2.     Ability to organize consumers to advocate for

        increases in amount and quality of services.

3.     Develop hands on knowledge of how delivery system works

        to enhance systems advocacy role of organization.

4.     Use resources received from delivery of services for

        continuing and increased advocacy efforts.

DRAWBACKS

1.     Getting co-opted by fear of losing contracts

        or other economic considerations.

2.     Consumers not satisfied with your services.  Organization

        becomes the problem.  Potential conflict with advocacy role.

3.     Balancing how much time is spent in each area.

4.     Fear of litigation.

III. COMPONENTS of Agency Delivered Consumer Directed Services

1. Maximum control by the consumer to select, manage and dismiss the attendant, regardless of who is the employer of record.

2.  Flexibility of services.  The consumer has the responsibility to determine when and how these services are delivered.

3.  Services must be provided in the community.

4.  Services are available based on functional and health maintenance needs, regardless of persons disability and/or age.

5.  Services allow for unlicensed people to perform health maintenance tasks through nurse/physician delegation or assignment.

6.  Agency should provide a pool of attendants for the consumer to select.

7.  System has a back up and emergency requirement that is designed by the consumer

 
IV. ADAPT DEFINITION of Consumer Direction

As it relates to program design for attendant services, consumer direction means the right of the

consumer to select, manage and dismiss an attendant. The consumer has this right regardless of who serves as the employer of record, and whether or not that individual needs assistance directing his or her services.

This includes but not limited to delivery systems that use:

-Vouchers

-Direct cash
-Fiscal intermediaries

-Agencies that allow choice (Agencies with Choice)

(Concept included in MiCASSA S. 401 and HR. 910 )

 
V. AGENCY with Choice Model 
 

The disability community has not had good experiences with agencies that provide personal attendant services.  Traditional home health agencies use a medical focus and tend to want to control what goes in the home of the service recipients.  These negative experiences have deterred us from looking at alternative contract agency models -- models that are different from traditional home health and provide consumer choice and control although

the agency remains the employer of record.

The "Agency with Choice" model instills the "Independent Living" principles in the contracts of all agencies that provide personal attendant services.  These principles would be made requirements or minimum standards of the contract that would require consumer choice and control fundamentals.  The ability to control the person who provides your personal attendant services is fundamental to the principles of independent living.

The disabled person would be able to select, manage and dismiss personal attendants.  Service recipients would be encouraged to find their own attendants and send them to the contract agency for employment.  If an individual cannot find an attendant, the contract agency would be required to send several people from among whom the disabled person can choose an attendant.  Service recipients would also be able to dismiss the attendant if they cannot work together; however, the attendant would remain an employee of the contract agency -- available for referral to other people, unless abuse or neglect was the cause of the dismissal.

Assessment of hours and services would be negotiated between the consumer and the contract agency, and an appeal process would be available if agreement cannot be made.  Management of the hours and tasks, once assessed, would be the responsibility of the disabled person.  Services would be available 24 hours a day, 7 days a week.  Consumers would coordinate the schedule unless they requested that the contract agency act as scheduler.

The contract agency would be required to have back up and emergency systems in place as a fail-safe if the consumer's back up system fails.

Taxes, workers compensation, insurance and benefits would all be administered by the contract agency. If multiple contract agencies provide the services in a given area, consumers would be allowed to choose any agency and to change agencies if they desire.

Concerns about the "Agency with Choice" model include:

1. Will the contract agency cost more because of profit motive

    and administrative costs?

2. Will people with disabilities and families truly have

    choice and control?

3. What about bureaucratic rules and regulations?

4. Can contract agencies really provide all the choices the  

    independent living principles require?

There is no perfect model of personal attendant service delivery.  We must assess the trade-offs and understand the implications of choosing one model over another.

One final point, the various models are not mutually exclusive and can be provided side by side or in combination.  There are variations on the pure voucher, fiscal intermediary and "agency with choice" models that combine facets of each.  This is called the Spectrum model.  These variations and different options can meet the diverse consumer direction/self determination needs of people with disabilities and family members regardless of these individual's ages, disabilities or skill levels.