Choice Advocacy Tools

Source: VOR Weekly E-Mail Update, March 12, 2004

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1. Grassroots Lobbying Tips

2.  Defining Choice

3.  What Olmstead is Not, by Bill Sherman

4.  Cost Comparison Study

5.  Choice in state laws and legislation 

6. Model Testimony: Real life example from Maryland that pulls it all together

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1. Grassroots Lobbying Tips

Summary: A document prepared by VOR follows. Two other very good resources 

are also available online: "Hot Tips for Advocates," by The Arc of

Washington State, http://www.arcwa.org/pdf/HotTips2008.pdf; and "Making Your

Case," by Minnesota Governor's Council on Developmental Disabilities,

http://www.mncdd.org/extra/publications/Making_Your_Case.pdf

HOW TO APPROACH YOUR LEGISLATORS

This statement is intended to provide simple but effective guidelines on

how to influence state or federal elected officials who represent you and

your family member with mental retardation.  

Whether by letter or in person, your goal is to always provide reliable

information (don't stretch the truth!) based on personal experience and

knowledge as a parent, guardian, family member and/or advocate, as well as

an active member of a larger constituency of families with similar concerns

(i.e., Voice of the Retarded, or your local parents organization).  

You should provide legislators or their staff with written information that

will help them arrive at a logical and responsible decision that will be in

keeping with the outcome you are seeking.  The more they hear from you and

others, the more their reality awareness level on that subject increases,

and the greater is your opportunity to prevail.  Remember, like all of us,

legislators have a learning curve.  It is our job to help an elected

official become more educated and more comfortable with an issue that is

vital to you, their constituent.  They need and want your help in telling

them how legislation would affect their district.

Effective lobbying is based on friendly, informative, respectful, long term

relationships. 

PERSONAL MEETINGS

*Always call for an appointment and indicate why you want to meet.

*Plan an agenda for the meeting.

* On arrival, introduce yourself and thank them for the appointment.

* Time meeting to be 15 minutes or less. Introduce the issue up front. Keep

it short and to the point. . 

* Use facts. When possible, have documentation in support of your position.

 Have a copy to leave behind. 

 * Advocacy organizations are resources for support information. If you are

a representative of a larger group that shares your concerns, have a

business card with your name and the organization's name printed on the

card to leave with the legislator.

* Be friendly, informative, tactful, respectful, polite and don't over

extend your welcome. You may need to visit again.

* If an inquiry requires a later response, follow-up by phone if time is of

the essence, otherwise by mail. 

* Always send a thank you note.

* Always keep a copy of all written correspondence and replies.

BY MAIL

A successful and effective letter is straightforward, simple and to the

point. It should be one page if possible, with supporting enclosures when

needed.

* Identify yourself as a constituent and give your name, address, phone

number, fax, etc. 

* If appropriate to the issue at hand, identify your membership with a

larger group that shares your concerns.

* Use your own words and your own stationary. If writing as a

representative of a group, use the organization's stationary.

* Include the issue and bill number and title, if applicable, in the first

paragraph. Be brief and discuss only one issue per letter.  

* Explain what you think should be done about the problem. Be clear about

what you see as an appropriate outcome, even if your request is personal.  

* If writing about legislation, ask for the present status of the bill, and

planned future action.

* Also write when your legislator has done something of which you approve.

A note of appreciation will make your legislator remember you more

favorably the next time you write.

* Write or call if you do not get a response within a reasonable time, or

your response is a form letter that does not address your individual

concerns.  You can request a personal response.

* Always keep a copy of all written correspondence and replies.

TIPS FOR TESTIFYING

1. Be Yourself! Someone asked you to testify because of who you are and

what you and your family have experienced with the health care system.

Start off with your name where you come from and where you work. Be clear

about what organization you represent if you are there on behalf of a

group.

2. Tell your story. The real, personal examples of your family and your

child with special health needs are what set you apart from others who

might testify. Talk about the daily challenges (finances, job, siblings,

etc.) you and your family face because of your child's health condition.

3.  Use pictures or graphics. Passing around a photo of your family makes

your story even more real.

4.  Provide written testimony. If possible, type it and have enough copies

for the entire committee. Include your name, address, and phone number.

Don't expect anyone to read more than a page during the hearing. If you

need or want to submit long reports, give them to the staff of the people

hearing testimony --preferably, a few days before the hearing.

5.  Provide your ideas on solutions. What would have made a difference for

you and your child? Try to be practical and specific.

6.  If possible, talk dollars and cents. Mention how you think money could

be saved, but make sure your numbers add up.

7. Be factual. Always tell the truth or risk losing your credibility.

8.  Be polite, courteous, and respectful. lt returns to you.

9.  Control your temper. If you are losing control, provide written

testimony only.

10.  If specific legislation is involved, explain how it will affect your

child and family.

11.  Do not be afraid. You are talking to people who may have experienced

similar situations within their own families or through friends. And you

are an equal with the policymakers and politicians you face (often you know

more about the particular subject about which you are testifying). 

12. Keep it short. One page written (really!) or five minutes oral is

enough.

13.  Be prepared for questions. It's OK, however, to say, "I don't know."

14.  Do not be redundant. If someone before you has said pretty much the

same thing, agree with that person and don't repeat.

Before You Go -- Allow plenty of time to beat the hearing-a half day at

least. It helps to get a sense of what's happening before you testify. Wear

nice clothes that make you feel good. Encourage and support others to

testify. Don't always be the only one there.

After the Hearing --  Thank members of the committee, especially anyone who

was especially helpful or sympathetic to your issues. Establish

relationships with appropriate policy makers and their support staff.

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2. Defining Choice

==> Webster's dictionary

Choice n 1: the act of choosing: SELECTION 2: the power or opportunity of

choosing: OPTION  3: the best part  4: a person or thing selected  5: a

variety offered for selection. 

==>Medicaid Law:  42 U.S.C. §1396n(c)(2)(C)

A Medicaid Home and Community-Based Waiver shall not be granted unless the

state provides satisfactory assurances that such individuals who are

determined to be likely to require the level of care provided in a

hospital, nursing facility or intermediate care facility for the mentally

retarded are informed of the feasible alternatives, if available under the

waiver, at the choice of such individuals, to the provision of inpatient

hospital, nursing facility services or services in an intermediate care

facility for the mentally retarded. 

==> Medicaid regulation: 42 C.F.R. §441.302(d)

When a recipient is determined to be likely to require the level of care

provided in a hospital, nursing facility, or intermediate care facility for

the mentally retarded, the recipient or his or her legal representative

will be - 

(1) Informed of any feasible alternatives available under the waiver, and

(2)Given the choice of either institutional or home and community-based

services.

==>  Medicaid Regulation:  42 C.F.R. §441.303

The [state] agency must furnish CMS with sufficient information to support

the assurances required by §441.302, including

* * *

(d) A description of the agency's plan for informing eligible recipients of

the feasible alternatives available under the waiver and allowing

recipients to choose either institutional services or home and

community-based services. 

==>Penny Thompson, (former) Acting Director, Center for Medicaid and State

Operations, HHS, in a letter to Carole Sherman (February 5, 2001)

(excerpt):

Federal Medicaid policy supports an individual's right to choose where they

receive Medicaid services for which they are eligible. For example, States

are required by Federal law to offer individuals who are eligible for

Medicaid home and community-based waiver services the choice between

community-based care under the waiver program or institutional services. 

==>Olmstead v. L.C., 119 S. Ct. 2176 (1999) 

Olmstead set forth a three part test to determine if community placement is

appropriate (i.e., institutionalization is unjustified):

(a) the State's treatment professionals have determined that community

placement is appropriate; 

(b) the transfer from institutional care to a less restrictive setting is

not opposed by the affected individual; and 

(c) the placement can be reasonably accommodated, taking into account the

resources available to the State and the needs of others with mental

disabilities." 119 S. Ct. at 2181 (emphasis added).

A majority of Justices in Olmstead recognized an ongoing role for publicly

and privately-operated institutions:

"We emphasize that nothing in the ADA or its implementing regulations

condones termination of institutional settings for persons unable to handle

or benefit from community settings...Nor is there any federal requirement

that community-based treatment be imposed on patients who do not desire

it." 119 S. Ct. at 2187.

==>"The Olmstead "choice" provision and guardianship rights," by Patricia

Williams, Esq., September 6, 2003 (excerpt)

Although there has been much discussion within the disability community of

the meaning of "choice" and how "choice" can be exercised by persons with

severe developmental disabilities, there has been no genuine legal

challenge to the authority of parents of minor children and guardians or

conservators of adults with developmental disabilities to be primary

decisionmakers in those areas recognized by competent courts of

jurisdiction.

==>The Developmental Disabilities Assistance and Bill of Rights Act, 42

U.S.C. §2001(c)(3)

(c) POLICY. -It is the policy of the United States that all pro-grams,

projects, and activities receiving assistance under this title shall be

carried out in a manner consistent with the principles that-

* * *

  (3) individuals with developmental disabilities and their families are

the primary decisionmakers regarding the services and supports such

individuals and their families receive, including regarding choosing where

the individuals live from available options, and play decisionmaking roles

in policies and programs that affect the lives of such individuals and

their families.

==> Individuals with Disabilities Education Act Regulation

34 CFR § 300.551 Continuum of Alternative Placements (a) Each public agency

shall ensure that a continuum of alternative placements is available to

meet the needs of children with disabilities for special education and

related services.

"Continuum" shall include "instruction in regular classes, special classes,

special schools, home instruction, and instruction in hospitals and

institutions." 34 CFR §300.551(b). 

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3.  What Olmstead is Not

DON'T BE MISLED ON WHAT THE OLMSTEAD SUPREME COURT DECISION SAYS

by Bill Sherman, Esq. 

Chairman, VOR Legal Committee

504 Pyramid Place - 221 W. 2nd Street

Little Rock, AR 72201

(1)     What Olmstead is Not:

"Olmstead" is not a federal act or statute.  Rather, it is a U.S. Supreme

Court decision, which reinforced the rights of individuals with mental

retardation and their parents and guardians to choose the residential

setting that is best for these persons.

(2)   How Olmstead is misused:

In support of their objective to downsize and close ICF/MR (Intermediate

Care Facilities for the Mentally Retarded), certain advocates are

emphasizing portions of the Court's opinion regarding "unjustified

institutionalization" and ignoring important parts of the Court's decision.

(3)   The Olmstead decision supports facility-based (institutional care)

for those individuals whose severe impairments require the close care found

in such settings.

A majority of Justices in Olmstead recognized an ongoing role for publicly

and privately-operated institutions:

"We emphasize that nothing in the Americans with Disabilities Act or its

implementing regulations condones termination of institutional settings for

persons unable to handle or benefit from community settings. . . Nor is

there any federal requirement that community-based treatment be imposed on

patients who do not desire it."  119 S. Ct. at 2187

"Unjustified isolation, we hold, is properly regarding as discrimination

based on disability.  But we recognize, as well, the States' need to

maintain a range of facilities for the care and treatment of persons with

diverse mental disabilities, and the States' obligation to administer

services with an even hand."  119 S. Ct. at 2185.

The plurality opinion in Olmstead stated:

   "Each disabled person is entitled to treatment in the most integrated

setting possible for that person - recognizing on a case-by-case basis,

that setting may be an institution." 119 S. Ct. at 2189.

(4)  Olmstead encourages a continuum of service options for disabled

persons - home, community and institutional:

   In  addressing the issue of when a disabled person's care may be changed

from institutional placement to community placement, the Olmstead decision

set forth a three part test to determine if community placement is

appropriate:

"(a)  the State's treatment professionals have determined that community

placement is appropriate;

  (b)  the transfer from institutional care to a less restrictive setting

is not opposed by the affected individual; and

  (c)   the placement can be reasonably accommodated, taking into account

resources available to the State and the needs of others with mental

disabilities."  119 S. Ct. at 2181

(5)  People with mental retardation, especially individuals with severe and

profound mental retardation, and their families have vastly different

support requirements than those with physical disabilities.  As families

age, their abilities to be the primary care givers (and fiscal

intermediaries) will also change.  Arkansas should continue its continuum

of services for each stage of care-giving.

We are families and friends of disabled persons who support the full

continuum of residential options required by the disability community and

addressed by Olmstead. For many years, Arkansas has offered competent and

compassionate care through its state-operated and private intermediate care

facilities.  In recent years, the state has also offered support for

families who care for their disabled children at home and has steadily

increased its support of community-based services (through the home and

community-based waiver).  

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4.  Cost Comparison Study

VOR Press Release

April 2003

NEW STUDY RESEARCH SHATTERS MYTHS ABOUT COSTS OF CARING FOR PEOPLE WITH

MENTAL RETARDATION AND DEVELOPMENTAL DISABILITIES

The widely-held belief by policymakers that it always costs less to care