These are exciting days. We are writing to you about what maybe a pivotal chapter in our efforts to obtain family support for families of children with disabilities. And we are writing to tell you how you can help turn this dream into a reality.
For the past year, families of children with disabilities from all over the country, together with the Consortium for Citizens with Disabilities, have worked to develop recommendations for federal legislation on family support for children with disabilities. The U.S. Senate Subcommittee on Disability Policy, which is part of the full Senate Committee on Labor and Human Resources, this spring plans to introduce federal legislation that advocates for family-centered and family-directed systems of support. If ultimately adopted and signed into law, this bill would send a clear message in Federal law that families are the primary resource caring for children with disabilities.
As you may know, reaching this point with any government body is an extensive process that involves many complex discussions and negotiations. And successful passage of this bill will require not only further discussions and negotiations, but the commitment of individuals and families like yours who are willing to make your voices heard.
The packet you have in your hands contains information and tools you may use to support your cause. It is designed to simplify the process of contacting your elected officials to express your support for this legislation. The packet also is designed to help you contact members of the news media to encourage them to write about the problems created by the present system, problems that this legislation can help solve.
Let us be clear - this will be a long process, very likely several months in length. Success will neither come easily, nor quickly. But if we cast our efforts together and make our voices and wishes heard by those we have elected to represent us, then we are hopeful that we will succeed in our quest.
The attached sheet describes the materials in this packet and includes some recommendations on how you may proceed. If you have any questions, you may call either of us, or the public relations team working with Colleen Wieck in Minnesota.
We wish you the very best in your efforts and encourage you to seize this truly exciting moment in our history together.
Sincerely Yours, .
Mr. AlIan I. Bergman Ms. Fran Smith
Director of State-Federal Relation Consultant
United Cerebral Palsy Associations 2574 Sheldon Drive
1522 "K" Street NW, Suite 1112 Richmond, CA 94803 Washington, D.C. 20005 Phone: (510) 222-2999
Phone: 1-800-872-5827
Family Support Legislation
Packet Contents
Your voice can play a crucial role in the passage of this legislation. To support "The Families of Children With Disabilities Support Act," we are recommending that you consider taking any one or all of the following actions:
Contact your Senator by phone or mail to express support for this legislation. Since the legislation has not yet been introduced in the House, we are limiting our action to only the Senate at this time.
Call your Senator's office and ask for a copy of the Bill. This will help them tally interest in this issue.
Contact members of the Senate Labor and Human Resources Committee to thank them for taking on this challenge and introducing this legislation.
Contact members of the national news media to encourage them to write about the need for this legislation.
Encourage other families and individuals You know to take these same steps by circulating these materials to them.
To assist you in this effort, here are the materials we are providing to you:
"The Family Support Act: Realities, Principles and Focus" - this is a three- page summary of the focus and provisions of the bill. You may use it for background, or make copies for the news media and your partners.
"The Case for Family Support" - This one-page fact sheet contains important statistics that can help present the need for this legislation.
"Saving Families, Saving Money" - This one-page fact sheet demonstrates how the state of Minnesota increased its services to children with disabilities by adopting a family support focus.
Sample letter and phone scripts for contacting your elected officials on this issue,
Background information and guidelines on how to phone, write and work with your Senator and other elected officials.
Guidelines on how to approach the news media, along with addresses and phone numbers of key national news media likely to have an interest in this issue.
If you have any questions or need assistance, don't hesitate to call any of the individuals and phone numbers listed in this material.
Family Support Legislation
Key Messages
When speaking to elected officials, media representatives, support groups or others interested in this issue, it is important to focus your discussion on what you would consider to be your main points or "key messages" that you would want someone to most remember. It is most effective when each key message or main point is stated individually and then backed up either with statistical information or real-life examples that demonstrate why that statement is important.
Here are three key messages you may want to consider using as you begin forming your ideas on what you might say in support of this legislation. As you contemplate these, consider how you would support each with statistical information or real-life examples.
There is a need for statewide, comprehensive, coordinated, interagency systems of family support that are family-centered, family directed and easily accessible.
(For an example of supportive information, see for instance "The Case for Family Support" information sheet.)
Establishing a family-centered, family directed system of family support such as described in "The Families of Children with Disabilities Support Act" would result in a more efficient and cost-effective system.
(For an example of supportive information, see for instance the "Valuing Families, Saving Money" information sheet.)
Children and families would directly benefit from a family-centered, family directed system of family support - families would be strengthened, communities would be enriched, and ultimately, a greater number of people in need would be served.
(For an example of supportive information, see for instance the "Valuing Families, Saving Money" information sheet.)
The Family Support Act:
Realities, Principles & Focus
The Families Of Children With Disabilities Support Act advocates for family- centered and family-directed systems of support that meet the real needs of families caring for children with disabilities. Following are some of the societal realities, policy principles and areas of focus that have guided the development of this bill:
The Realities
Children benefit from enduring family relationships in a nurturing home environment.
High financial outlays and significant physical and emotional challenges limit the ability of many families to meet the special needs of their children.
Financial disincentives are currently forcing some families to make unwanted out-of-home placement of their son or daughter.
Supporting families to care for their children with disabilities at home is both efficient and cost-effective.
There is a need in most states for statewide, comprehensive, coordinated, interagency systems of family support that is family-centered, family directed and easily accessible. These systems should avoid duplication, use existing resources more efficiently and prevent gaps in service.
The Principles.
Families should be supported in determining their own needs and in making decisions concerning necessary, desirable and appropriate services. They should play decision-making roles in developing policies and programs that affect their lives.
Family supports must focus on the needs of the entire family. Family needs change over time, and family support must be flexible.
Supports must be sensitive to the unique needs, strengths and cultural values of the family.
Family support must be proactive and not solely in response to crisis.
Families should be supported in their choice for integration and inclusion of their children within the community. Family support should promote the use of existing social networks, strengthen natural sources of support and help build connections to existing community resources.
- more -
The Case For Family Support
The U.S. system of services for people with disabilities is often described as a patchwork quilt. Unfortunately, that quilt is ridden with holes and provides little shelter for families struggling to care for a child with a disability.
The current focus on achieving independence for people with disabilities neglects members of their household. The people who share a household with (and care for) a person with a disability carry a difficult burden, one which strains both their pocketbook and their spirit.
More than $17 billion a year is spent on disability services, benefits and programs. This money maintains a system that is fraught with overlapping segments, conflicting eligibility criteria, and inconsistent regulations.
(Source: Braddock, D., el. al., Institute on Disability and Humm Development, University of Illinois at Chicago, 1994)
The money spent on disability services by government agencies is highly weighted toward costly out-of-home care and tends to encourage dependence, rather than independence, by not helping people obtain the skills and resources they need for life in the community.
Only one cent of every dollar allocated by the U.S. government to help individuals with disabilities goes to help families support their child at home. The other 99 cents are spent on out-of-home care.
(Source: Knoll, J., et. al., Human Services Research Institute, 1990)
There is a national trend toward de-institutionalization, but the allocation of support is lagging behind. In 1977, 91,000 individuals under age 21 with mental retardation lived in public or private institutions. That number fell to 60,000 in 1982, and to about 48,500 in 1987. Despite this significant shift, family support services have reflected a relatively small corresponding increase.
(Source: Birenbaum and Cohen, American Association on Mental Retardation, 1993)
Substantial cost savings can result from redirecting resources to family-based care.
Typical family-based support programs average between $7.00 and $15.00 per child, per day. Conversely, out-of-home placement costs can approach $250 per child, per day, and rarely are below $100.
(Source: Minnesota Disability Law Center, United Cerebral Palsy Associations, 1993)
For more information, contact Greg Smith, Colle & McVoy Public Relations, at (612) 851-2555, or Brian Kane, Colle & McVoy Public Relations, at (612) 851-2644.
Valuing Families, Saving Money:
A Minnesota Model
The state of Minnesota began a significant redirection of resources for disability-related services in the 1980's. The state systematically defined public policy with a value declaration that all children, regardless of severity of disability, have a right to grow up in a family home and that families should be supported rather than supplanted in their primary caregiving responsibility for children with developmental disabilities.
The Minnesota experience from 1980-90 demonstrates how increasing family support gives relief to both families and government budgets.
In 1980, Minnesota spent $20.4 million on services for children with developmental disabilities.
Out of that $20.4 million, 830 children received services out of the home, separated from their families. Only 50 children benefited from family- directed subsidies.
In 1990, following a decade-long redirection of resources, Minnesota spent $24.3 million (a 20 percent increase) on residential services for children with developmental disabilities.
$10.8 million was spent to provide services for 219 children in facilities away from home.
$13.4 million was spent for 1,827 Minnesota children to receive family support services in the home.
THE BOTTOM LINE: Over a decade, the number of children receiving state support in Minnesota increased by 240 percent, while spending increased in that lo-year period by only 20 percent.
If Minnesota had not enacted this change of focus, it would have had to allocate more than $44 million to serve the same number of children (830) who in 1980 received out-of-home services for just over $20 million.
Most importantly, this redirection of resources has allowed the state of Minnesota to drastically expand the number of people receiving support (to 2,046), serving both the individuals with disabilities and their caregiving families.
The Minnesota experience offers evidence that sound social policy and sound economic policy can add up to a win-win for everyone involved.
(Source: Minnesota Disability Law Center, United Cerebral Palsy Associations, 1993)
For more information, contact Greg Smith, Colle & McVoy Public Relations, at (612) 851-2555, or Brian Kane, Colle & McVoy Public Relations, at (612) 851-2644.
How to..
Work With Your Elected Officials
Be fair and be informative.
Be understanding of the pressures being applied to elected officials by others whose views are different from yours.
Be friendly and maintain contact; don't wait until a crisis to seek them out.
Be reasoned and reasonable in presenting your arguments.
Be charitable (up to a point) about delays in their response or action.
Be constructive and cooperative. Try to present alternatives.
Be realistic and persistent, but recognize that politics is the art of compromise.
Be practical and offer sound arguments.
Be a good opponent. Fight the issue, not the person.
Be informed and loyal to your position.
Be trustworthy.
Be calm and evaluative.
Be generous in giving credit where credit is due.
Be visionary, realizing you may still win the war after losing a battle.
Be willing to work at your arguments and through your contacts.
How to...
Call Your Senator
Telephone numbers (in Washington, D.C.) for U.S. Senators on the Senate Subcommittee on Disability Policy and on the Senate Committee on Labor and Human Resources are included in this packet.
Identify yourself to the person who answers the phone. Be sure to say that you area a constituent in your senator's state. If the senator is unavailable, ask for his or her aide on Disability Policy issues.
If you are not a constituent, but are calling a Senator who is a member of a key committee, you can appeal to the Senator's role as a states person and explain that you are urging him or her to vote on behalf of all families.
Tell the Senator the issue or bill number you're calling about. Give your position and the reason for your position.
Briefly explain the likely impact of a bill on your family and on the senator's constituents in general.
If the senator is unavailable, give the aide or staff member your message. Congressional staff are very good at relaying messages.
Be polite. Keep party politics out of the discussion.
Say "thank you" for the senator's consideration of your views.
Sample Phone Scripts
Hello, my name is . I am a parent caring for a child with a disability, and I'd like Senator/Representative to know that I support The Families Of Children With Disabilities Support Act currently under consideration in Congress. Families such as mine are currently faced with inadequate systems of support that rarely meet our individual needs and often contribute to the breakdown of families. The Families Of Children With Disabilities Support Act is an important first step in ensuring that my family and families like mine can obtain the support we need in order to provide for our children and keep our family intact. Thank you for your consideration.
Hello, my name is and I'm calling to urge Senator/Representative to support legislation that works to establish better systems of support fm families caring for children with disabilities. The Families Of Children With Disabilities Support Act does just that. As a parent of a child with a disability, I have learned firsthand about the limitations and inadequacies inherent noncurrent systems. I want support that allows me to both determine my family's needs and contribute to decisions concerning desirable, necessary and appropriate services. Senator/Representative can help my family and thousands of other families like mine gain supports that are sensitive to our individual needs. Thank you.
Hello, my name is . It's time to give individual states the guidance tore-shape systems of support for families caring for children with disabilities. Currently, too many resources are being misdirected and too many families are suffering' because of it. The Families Of Children With Disabilities Support Act will help set states on a more fiscally sensible and socially responsible path. We need a serious redirection of philosophy and resources. Senator/Representative can help make this a reality by supporting The Families Of Children With Disabilities Support Act. Thank you.
How to...
Write to Your Senator
Elected officials care about what you say. A logical, courteous, personal letter carries weight: it can change a senator's mind, particularly when the senator is wavering on an issue.
It is important that your message & written as effectively as possible. Here am a few pointers: Be sure to say that you are a constituent in the senator's state.
Limit the letter to one subject.
Be as brief as possible (no more than one piece of paper), but don-'t sacrifice clearness and completeness.
State your purpose at the outset and use the remainder of the letter to expand your views.
Letters about a particular bill should include its name, bill number (if you know it) and subject matter, because there may be several bills concerning the same topic. If your senator or representative is an author of the bill, acknowledge that.
Explain in your own words how you feel about the need for (in this case) The Families With Disabilities Support Act.
Issues you write about may be emotion-laden; be factual rather than emotional.
Legislators want to know how votes actually affect constituents. Give Facts and illustrations.
Don't assume that a legislators as well-informed as you about a problem. Explain the situation, what you think and why.
A polite, positive-sounding letter is more likely to impress than one that is negative, rude or threatening.
Be certain that your name and address are on the letter.
Send a note of appreciation if your legislator supports your issue.
To obtain the file number or a copy of the "The Families of Children with Disabilities Support Act;" call your Senator's office and ask for the senate number of the Bill and a copy, if you desire one.
Finally, always close by asking for a written response.
Sample Letter To Senator/Representative
DATE
The Honorable Edward M. Kennedy
SD-428 Dirksen Senate Office Building
Washington, D.C. 20510-6300
Dear Senator Kennedy:
I am writing to urge you to support "The Families Of Children With Disabilities Support Act," which will provide incentives to states to develop and enhance statewide systems of support for families caring for children with disabilities. I urge you to lend your support to this bill.
My family has a personal stake in this issue. (Briefly describe your family's experience; for example, our son/daughter was born with ( ), which has left him/her (describe condition). In seeking to provide for his/her needs we have encountered numerous obstacles, such as ( ). We want to care for our child in our home and keep our family intact, but are prevented from doing so by a system that is difficult to access and which places incentives on out-of-home care.) Parents like me/us across the country face similar obstacles as we strive to keep our families functional and intact Your support of "The Families Of Children With Disabilities Support Act" will provide thousands of families like mine with art opportunity to shape our own destiny and experience the freedom that many other Americans have come to take for granted.
I will look forward to receiving a letter from you that indicates your intention regarding "The Families Of Children With Disabilities Support Act."
Thank you for your consideration.
Sincerely,
Your Name
Your Address
Your Phone Number (optional)
Senate Committee on Labor and Human Resources
SD-428 Dirksen Senate Office Building
Washington, D.C. 20510-6300
PH: 202/224-5375
Senator Edward M. Kennedy, D-Mass.
Committee Chairman
SR-315 Russell Senate Office Building
Washington, DC 205 N)-21O1
PH: 202/224-4543
FAX: 202/224-2417
TDD: 202'224-1819
Senator Jeff Bingaman, D-N;M.
SH-110 Hart Senate Office Building
Washington, DC 20510-3102
PH: 202/224-5521
PH: 202/224-1792
Senator Christopher J. Dodd, D-Conn.
SR-444 Russell Senate Office Building
Washington, DC 20510-0702
PH: 202224-2823
Senator Tom Harkin D-Iowa
SH-531 Hart Senate Office Building
Washington, DC 20S10-1502
PH: 202/224-3254
TDD: 202/224-4633
Senator Howard M. Metzenbaum, D-Ohio
SR-140 Russell Senate Office Building
Washington, DC 20510-3502
PH: 202/224-2315
Senator Barbara A. Mikulski, D-Md.
SH-709 Hart Senate Office Building
Washington, DC 20510-2003
PH: 202/224-4654
FAX: 202/224-8858
TDD: 202/224-5223
Senator Nancy Landon Kassebaum R-Kan.
Ranking Minority Member
SR-302 Russell Senate Office Building
Washington, DC 20510-1602
PH: 202/224-4774
TDD: 202/224-1165
Senator Dan Coats, R-Ind.
SR-404 Russell Senate Office Building
Washington, DC 20510-1403
PH: 202/224-5623
TDD: 202/224-9449
Senator Dave Durenberger, R-Minn.
SR-154 Russell Senate Office Building
Washington, DC 20510-2301
PH: 202/224-3244
TDD: 202/224-9522
Senator Judd Gregg, R-N.H.
SR-393 Russell Senate Office Building
Washington, DC 20510-2904
PH: 202/224-3324
FAX: 202/224-4952
Senator Orrin G. Hatch, R-Utah
SR-135-Russell Senate Office Building
Washington, DC 20510-4402
PH: 202/224-5251
FAX: 202/224-6331
TDD: 202j224-2849
Senator James M. Jeffods, R-Vt.
SH-513 Hart Senate 0ffice Building
Washington, DC 20510-4503
PH: 202/224-5141
Senate Committee on Labor and Human Resources
SD-428 Dirksen Senate Office Building
Washington, D.C. 20510-6300
PH: 202/224-5375
Page 2
Majority Members
Senator Claiborne Pell, D-R.I
SR- 335 Russell Senate Office Building
Washington, DC 20510-3901
PH: 202/224-4642
TDD: 202/224-6564
Senator Paul Simon, D-Ill.
SD-462 Dirksen Senate Office Building
Washington, DC 20510-1302
PH: 202/224-2152
TDD: 202/224-8180
Senator Paul David Wellstone, D-Minn.
SH-717 Hart Senate Office Building
Washington, DC 20510-2303
PH: 202/224-5641
TDD: 202/224-4754
Harris Wofford, D-Penn.
SD-521 Dirksen Senate Office Building
Washington, DC 20510-3803
PH: 202/224-6324
TDD: 202/224-1063
Minority Members
Senator Strom Thurmond, R-S.C.
SR-217 Russell Senate Office Building
Washington, DC 20510-4001
PH: 202/224-5972
FAX: 202/224-1300
Guidelines for...
Talking With News Media
Identify yourself and explain they you are a parent of a child with a disability, and that you are actively pressing for national legislation on family support issues
Ask the person an the phone if they are the right person for you to be talking with.
Once you have the right person on the line, ask that person if they are aware that there is national legislation in the Senate that would provide family support to families caring for children with disabilities.
Be prepared to answer their questions on 1) what family support is, 2) how does the current system fail to provide appropriate support, 3) what problems you have dealt with in the current system, 4 ) the name of the Act (and bill number) that addresses this situation.
Always try to give your main point first in your answers, such as by telling the person that the current system fails to provide proper support for families like yours and that national legislation is necessary to correct current hardships, inequities and disincentives.
Be brief in your responses to the reporter's questions; include only what is necessary.
Be specific, using examples, statistics, personal stories as illustrations.
Be personal; refer to your children by names, give details on yours and their emotional reactions to your situation.
Be persistent -- will they do a story on the need for the legislation and the problems it addresses? What other information do they need? How can you help them?
Don't let the reporter get you off track; emphasize that you are specifically interested in the need for family support and national legislation to correct the current system's shortcomings.
Realize that your phone call alone may not be enough to get an immediate response; but that it may take several phone calls from several people just like you to make the difference.
If you have any questions about this part of the process of supporting this legislation, you may call Allan I. Bergman, President, UCPA at (800) 872-5827, Fran Smith at (510) 222-2999, or the public relation team of Greg Smith and Brian Kane at either (612) 851-2555 or(612) 851-2644
Contacting The News Media
The following national news reporters and media representatives regularly write about national policy issues and have, on occasion, written about issues that are related to caring for children with special needs and government support for families in need. Many of these individuals also have previously received correspondence regarding the need for Family Support for families caring for children with disabilities.
Just as you urge your elected officials to support The Families of Children With Disabilities Support Act, please consider contacting these representatives of the news media to 1) call their attention to progress on The Families of Children With Disabilities Support Act, 2) express you struggles under the present system, and 3) express you desire to see The Families of Children With Disabilities Support Act adopted.
The more calls and letters these representatives receive from individuals and families like yours, the more likely they will be to acknowledge the problem and look into developing a story on the need for national legislation.
Also, if the person you call turns out to no longer be with the organization or has changed assignments, ask for the name and number of the person who would be interested in a story that involves national policy changes to support families caring for children with disabilities.
The following media representatives, (including US News & World Report reporter Joe Shapiro, who wrote the book No Pity, and his editor David Whitman), should be considered for contact first.
David Whitman, Senior Editor
US News & World Report
2400 North Street NW
Washington, DC 20037
PH: 202/955-2374
Fax: 202/955-2713
Joseph Shapiro, Associate Editor
US News & World Report
2400 North Street NW
Washington, DC 20037
PH: 202/955-2374
Fax: 202/955-2478
Angelia Herrin
USA Today
1000 Wilson Blvd.
Arlington, VA 22229
PH: 703/276-4581
Fax: 703/247-3290
Carol Castenada
USA Today
1000 Wilson Blvd.
Arlington, VA 22229
PH: 703/276-3648
Fax: 703/247-3290
Cage Ames, Family Editor
Newsweek
444 Madison Avenue
New York, NY 10036
PH: 212/350-4408
Fax: 212/421-4993
Michelle Ingrassia
Newsweek
444 Madison Avenue
New York, NY 10036
PH: 212/350-4928
Fax: 212/350-2141
Richard Lacayo, Associate Editor
Time Magazine
Time & Life Building
Rockefeller Center
New York, NY 10020
PH: 212/522-4242
Ursala Nadasy
Time Magazine
Time & Life Building
Rockefeller Center
New York, NY 10020
PH: 212/522-2407
Fax: 212/522-0323
Media To Contact
Page Two
Other media representatives to contact regarding The Families of Children With Disabilities Support Act:
Paul Haskins National Assignment Editor
New York Times
229 West 43rd Street
New York, NY 10036-3959
PH: (212) 556-1234
Fax: (212) 556-4603
Barbara Vobejda
Washington Post
1150 15th Street, NW
Washington, D.C. 20071-0002
PH: (202) 334-7430
Fax: (202) 334-1008
Marcia Van Dyke, Family Producer
CBS This Morning
CBS News
524 West 57th Street Suite 44
New York, NY 10019
PH: (212) 975-4739
Antoinette Machiavema, Producer
Today
NBC News
30 Rockefeller Plaza Suite 304
New York, NY 10112
PH: (212) 664-4571
Victoria Duncan, Producer
Today
NBC News
30 Rockefeller Plaza Suite 304
New York, NY 10112
PH: (212) 664-4571
Giselle Femandez, Correspondent
CBS Evening News
524 West 57 Street
Studio 47
New York, NY 10019
PH: (212) 975-3691
Fax: (212) 457-4385
Janice Horwitz
Time Magazine
Time & Life Building
Rockefeller Center
New York, NY 10020
PH: (212) 522-3840
Fax: (212) 522-0323
Randy Barone, Special Projects Producer
Good Morning America
ABC News
147 Columbus Avenue
New York, NY 10023
PH: (212) 456-5900
Lauri Beecher, Segment Producer
Good Morning America
ABC News
147 Columbus Avenue
New York, NY 10023
PH: (212) 456-5900
Julia Hartenstein
"American Agenda" Producer
World News Tonight
ABC News
77 West 66th Street
New York, NY 10023
PH: (212) 456-4040
Kathy Moore, Producer
CBS Evening News
524 West 57th Street
Studio 47
New York, NY 10019
PH: (212) 975-3691
Fax: (212) 457-4385
Cheryl Gould
NBC Nightly News
30 Rockefeller Plaza
New York, NY 10112-0002
PH: (212) 664-4971
For more information on working with the news media, contact either Greg Smith or Brian Kane of Colle & McVoy Public Relations in Minnesota at 612-851-2555 or 612-851-2644.
