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Steps to Support for All        

Steps to Support for All was honored to receive the Texas Association on Mental Retardation President's Award for "Making Significant Contributions on Behalf of Persons with Mental Retardation".
July 13, 2006
Texas Association on Mental Retardation Conference
Omni Hotel
Corpus Christi, TX 76039

Steps to Support for All seeks to serve all individuals who receive services through the Department of Aging and Disability Services in Texas.
Step members include leaders in our communities, former legislators, professionals who serve Texans who are aging or disabled, family members of, and individuals with, disabilities. The primary focus of Steps to Support for All is to encourage better funding and promote a broader, more effective, array of services for those who have disabilities or are seniors.

    Resources and Links        
    [Strategy for Success]     [History of Steps]     [2006 Step Issues]     [Stay Informed]     [Learn the Facts]     [Attend Forums and Hearings]     [Write your Legislators]     [Visit your Legislators]     [Share your information]     [Ask the Experts]     [Planning the Future]     [Public Agencies and Resources]     [Services for All]     [To Join Steps to Support for All]

    [Support Groups]     [Steps Handout July 2006]

Steps to Support for All Update and handout for 2007



Steps to Support for All handout



Strategy for Success - Education and Goodwill
  • Provide accurate information about the needs of those having disabilities or who are aging to the citizens of Texas through community leaders and organizations.

  • Stress the importance of working together in the distribution and delivery of service. All services are necessary! We do not place higher value on the needs of one segment over those of another segment.

  • Develop and promote partnerships between organizations so to improve current programs.

  • Encourage new initiatives that can provide a broader array of services to individuals receiving support from D.A.D.S.

    Where are we now and where are we going?
    June 2006 Update

    Through the sharing of accurate information, Steps to Support for All has earned the respect of many around our state. It has become a unifying association. Steps began as a means of providing factual, unbiased information. New members joined the mission so that they might help pull resources and programs together for the common good rather than striving to "win" money for one program at the expense of another (i.e. state schools programs over community-based services). Through Steps to Support for All, members with children in state schools work alongside members with children in community living arrangements. The strength of our association lies in the experience and honesty of its members. Each member's sincere desire to best serve ALL those in need is our unifying factor.

    Our association is still relatively new. It began in the fall of 2004 and the scope of its mission and its membership has blossomed. It is difficult to gage the actual membership of the association since our primary method of joining together is via Internet exchanges. Each post sent to 100 members is generally sent on to many, many others. In the spring of 2005 we were asked to become stakeholders for HHSC, so I gather our voices were definitely heard and respected during the general legislative session of 2005.

    Due to the extensive Steps network, valuable links are forming and new projects begun. Through Step contacts, the Come Read with Me project for life-long learning has joined forces with Texas Women's University, Eastern New Mexico University and Texas Tech University School of Education and School of Medicine. Their joint effort: to gather regular, long term, never-before-collected cognitive functioning data on adults with disabilities. This data is critical to the planning of proper long-term care for aging adults with cognitive disabilities.

    Steps to Support for All does not always call members to action, but often uses the individuals as a source of information and support. Steps members came together following hurricane Katrina to alert one another of possible resources and specialized help around our state. Because of the expertise of various Step members and the organizations to which they belong, crises information was developed, posted on the Steps website, and sent to hospitals and crisis centers. (Crisis referral page, Strategies for helping children with autism cope with upheaval) In addition to Steps successful efforts to facilitate better crises care for individuals with disabilities in medical facilities, the location of special housing for the special needs families was made available. Cook Children's Hospital in Ft. Worth specifically requested the assistance of Steps members throughout the state. Thanks to the initiative of individual support groups such as the Autism Society of Greater Tarrant County emergency information was delivered, while DIAL (Developing Independent Adult Living) and other Step associates formed buddy systems to lend an ear and a hand to special needs families as they faced the chaos in their lives. Step members alerted other Step members of needs and resources. They made a powerful alliance in the face of crises.

    Steps to Support for All Update for 2006 services to be supported

    Current Steps to Support for All: 2007

  • Gather and share accurate information about services and funding available in our state and others.

  • Establish and maintain positive working relationships with organization leaders and families within the state of Texas.

  • Establish and maintain positive working relationships with legislators and their staffs.

  • Impress upon service providers, organizations and our legislators the vital need for further research of cognitive function of aging persons with disabilities. How can we plan for their care without some general knowledge of their expected needs? We're entering uncharted grounds. In past generations, those with significant disabilities did not often live to be aging adults. We need to be gathering information now to provide guidelines for the planning of services for future generations.

  • Encourage life-long learning efforts for adults with disabilities. We are, after all, a mission of education. The incidence of early Alzheimer Disorder is proven to be seen more in the population of those with Down Syndrome than in the general population. There is speculation that perhaps other disorders may also exhibit this increased risk. If proven to be true, through the collection of cognitive data on adults with disability, it will demonstrate the overwhelming need to provide educational programs which promote cognitive function for adults throughout their life-time.

  • Work together in times of need.

  • Develop and promote partnerships between organizations (such as those of the Come Read with Me project and universities) which encourage new programs to better serve individuals receiving support from DADS.

  • In 2003, Texas ranked 47th among the states in the rate at which it furnished Medicaid longterm services (the combination of HCBS waiver and ICF/MR services).
  • Texas ranked 51st among the states in the rate at which it furnished community-based waiver services.
    See An Appraisal of Texas’ Level of Effort in Supporting Individuals with Mental Retardation and Related Conditions August 15, 2004 Prepared for: Advocacy, Inc. & The Arc of Texas
    Watch this page for updated information regarding the services currently offered in the state of Texas.
    **************************


    Services Supported in 2006-2007

    1. Adequate housing and services for those having exceptional needs who choose to stay in home-community settings.

    2. Adequate housing and services for the elderly citizens of Texas who choose to stay in home-community settings. Protect the service programs for older Texans, such as Area Agencies on Aging, which are working well.

    3. Community programs with a positive history. Maintain the local control that has produced these successful programs - do not allow restructuring (DADS) to sacrifice successful programs.

    4. Continuity of effective community services. Allow counties to do individual planning in the restructuring so to continue to use effective community services and funding i.e. food banks, local Area Agencies on Aging, etc., plus the extensive contribution by volunteers.

    5. Adequate housing and programs for those living in state schools.

    6. Pay scale raises to equitable levels for those providing medical and direct care to persons with disabilities to ensure qualified and sufficient personnel.

    7. Elimination of the waiting list for all Medicaid Waiver Programs through proper funding of needed services.

    8. Redefining the customer as the person in need of services and therefore eliminate compartmentalizing and restrictions that hamper delivery of services.

    9. Consistent services for the future of all with disabilities.

    10. Letting the market place determine what support is required for each individual, i.e. state school, community placement, in home and family support. The market place should determine what people need in order to minimize waste and provide appropriate service to the individual.

    11. Support programs to extend guardianship for 18-year-old foster children with mental retardation or developmental disabilities to age 22 to enable the young adults to receive support as they develop life skills training, establish work situations, or complete their educations. Upon reaching the age of 22, if the guardian is not a family member, then it would become necessary for the guardian to reapply to continue the guardianship if such care and protection are needed.

    12. Support voluntary emergency placements in state schools for families in crises.

    13. Support those items listed in the resolution passed by the Texas Guardianship Association 5-2-2005.


      While Steps to Support for All does not formally advocate as an association, the assaciation does encourage individual memebers to participate in our law making process as educators. The following are steps for effectively educating.

    1. To receive Action Alerts from Steps to Support for All! Request alerts Steps to Support for All from mk@mkdowney.com


      Steps to Support for All are working to effect change as they use these methods:

      1. Learn the Facts:

    2. Texas Legislature Online - Stay informed ! The best advocate is an informed advocate!

    3. HHS E-News

    4. HHSC Legislative Appropriation Request with consolidated waitings lists from all HHSC agencies

    5. Legislative Appropriation Request from the Department of Aging and Disability Services (D.A.D.S.)

    6. August 31, 2004 DADS Waiting List for Community Service and Institutional Progams

    7. Family Support Council Fact Sheet on Sources of Respite Funding

    8. Budget information for State of Texas Facilities

    9. Legislative Budget Board

    10. Understand the structure of The Consolidated Texas Health and Human Services System (its Commissions, Councils and Agencies)

    11. An Appraisal of Texas’ Level of Effort in Supporting Individuals with Mental Retardation and Related Conditions August 15, 2004 Prepared for: Advocacy, Inc. & The Arc of Texas

    12. Document with budget information: The State of the States in Developmental Disabilities

    13. Website for the State of the States in Developmental Disabilities

    14. American Association for Mental Retardation



      >hr> 2. Respond to Action Alerts!

      Texas House of Representatives - Current Activities

      view the Texas House of Representatives Chamber or Committee meetings live or archived.

      view the Texas Senate Chamber or Committee meetings live or archived.       Legislative hearing information

    15. To receive Action Alerts from Steps to Support for All! Request alerts Steps to Support for All from mk@mkdowney.com


      3. Stay informed:

      Current Activities in The Texas House of Representatives

    16. View our Legislature in action.
      You need a program such as Real One Player installed in your computer. The basic program is free. If you do not have it, you can click on       to download and install it. This is a WEB Page of the Legislature, but there is a reference to RealOne Player on that page.
      After you have RealOne installed, you’re ready to view selected testimony.

      view the House of Representatives Chamber or Committee meetings live or archived.

      view the Senate Chamber or Committee meetings live or archived.


      4. Attend Forums and Hearings:

      Tips for Testifying at Public/Legislative Hearings
      Prepared by Richard A. Hernandez
      Presented at the Texas Association on Mental Retardation meeting July 13, 2006

    17. DO YOUR HOMEWORK / BE PREPARED

      Don’t speak in generalities. Know the statistics and their sources, if you are going to cite numbers, history, rules, or prior legislation. You want to be confident that you are using credible, valid and current information that is not outdated or misleading. Be prepared for questions regarding your testimony. Prepare written testimony, if time permits, and be sure to make an adequate number of copies for all members of the committee. Make extra copies to leave in the offices of your own representatives, if they do not sit on the committees you testify before.

    18. COORDINATE YOUR TESTIMONY WITH OTHER STAKEHOLDERS

      Sometimes (frequently) an issue is very complex and needs to addressed in various ways and on many points. Share the load to make sure all pertinent points are conveyed. This is a good time management technique, as well.

    19. DON’T REPEAT

      When testifying, it’s tempting to hit an important point over again, for emphasis. Resist the temptation, as your time is limited and the committee members will appreciate that you are respecting their valuable time as well. If a previous speaker hits all your points, it is still important for you to make a public appearance and state that you want to go on record with your position regarding the proposed legislation. State briefly why you hold that position and indicate that a prior speaker has already articulated your points. It is best if you can identify that speaker by name.

    20. STICK TO THE FACTS

      Stay on track and don’t deviate from what is specifically germane to the proposed legislation you are concerned about. Though many of our issues and concerns are inter-related, it is not useful to digress into other “related” issues during public testimony. The members of the committee will be concerned about time and it will distract from your message regarding the question at hand.

      Do not “stretch” the truth or exaggerate the facts. The last thing you want is to compromise your credibility and lose the trust you may have earned from members of the legislature who will decide the important questions.

    21. TRY TO RELATE THE ISSUE TO A HUMAN ELEMENT

      Dry numbers, statistics and rules are compelling arguments, specifically when they are related to finances. But just as compelling is the human factor. Legislators are representatives of the People and are politically motivated, and as much as being “good stewards” of your tax dollars plays in the press, so does helping their own constituents. They need to know the consequences of their decisions on the districts they represent. That’s why the local, grassroots efforts are as important as Capitol visits during session.

    22. BE MINDFUL OF YOUR TIME

      Particularly when potentially controversial legislation is proposed, many people show up to testify in support of their position. When this occurs, the committee chair will limit the time allotted for each speaker during public testimony (usually three to five minutes each). Your presentation may require more time, so you should be prepared to summarize and truncate your presentation, articulating the most important points. This is one of the reasons it’s a good idea to coordinate with other stakeholders who share your position and why you should prepare written testimony as well. In these situations, it is also wise to be mentally prepared to spend long periods of time (hours) waiting for your turn to testify.

    23. BE PROFESSIONAL, POLITE AND RESPECTFUL

      No matter how hot an issue or how strongly you feel about your concern, it cannot be stressed strongly enough that inappropriate language, improper (condescending/disrespectful) attitude, or rude behavior will completely undermine your efforts with members of a committee. Many members of a house or senate committee may not be aware of the issues as you are (which is why they hold public hearings) and will be distracted from your issue by unprofessional, impolite or rude conduct. Remember, you are an ambassador for your cause and as such, you will want to make the most positive impression possible. Thank the members and especially the chairperson, for giving you their time and attention.


      Preparing to testify at a hearings

       view the House of Representatives Chamber or Committee meetings live or archived.

    24. Suggestions for Testifying at a Forum or Hearing

    25. Richard Hernandez Tips for Testifying at a Forum or Hearing

      If you cannot attend, help a friend or family member attend


      4. Write Your Legislators regarding funding issues:
      [What do we write?]     [Who do we write?]     [When do we write?]


      What do we write?

    26. Individuals: Write a letter with an example of a specific need or telling of a particular individual, have others also sign that letter. We have been told that a single letter with multiple signatures has more impact than being flooded with email posts, or having a form letter come in mass to legislators.

    27. Support groups/organizations: Write a letter representing those in your support group or organization. Have members sign the letter. This is a target step for the success of Steps to Support for All. It is important that our law and policy makers understand it is not just one small group of constituents that are calling for funding, but rather many groups, having various needs. Make your letters reflect the particular needs your members have which are not being met. Make sure your self-advocates also sign the letter.

    28. Self-advocates: Write a letter expressing your needs and those of your friends. Have your friends who are also self-advocates sign the letter. These letters are probably the most powerful.

    29. Please stress in your letters your specific needs, but also make it clear that additional funding is called for, not just the transferring of funds from another human services program to another. Stress there is an need for Services for ALL! We do not want gain for one group to be at the expense of another.


      Who do we write?

    30. Your legislators (locate your legislators)

    31. Legislative Budget Board (members' contact information)

      The Honorable David Dewhurst
      Co-Chairman
      Lieutenant Governor
      State Capitol, Room 2E.13
      Austin, Texas 78701
      E-mail:The Honorable David Dewhurst

      The Honorable Tom Craddick,
      Co-Chairman
      Speaker of the House of Representatives
      State Capitol, Room 2W.13
      Austin, Texas 78701
      E-mail: The Honorable Tom Craddick

      The Honorable Steve Ogden
      Chairman,
      Senate Finance Committee
      State Capitol, Room GE.4
      Austin, Texas 78701
      E-mail: The Honorable Steve Ogden

      The Honorable Jim Pitts
      Chairman,
      House Committee on Appropriations
      State Capitol, Room 4S.6
      Austin, Texas 78701
      E-mail: The Honorable Jim Pitts

      The Honorable Robert Duncan
      State Senator, appointed
      State Capitol, Room 3E.12
      Austin, Texas 78701
      E-mail: The Honorable Robert Duncan

      The Honorable James Keffer,
      Chairman,
      House Committee on Ways and Means
      State Capitol, Room E2.418
      Austin, Texas 78701
      E-mail: The Honorable James Keffer

      The Honorable John Whitmire
      State Senator, appointed
      State Capitol, Room 1E.13
      Austin, Texas 78701
      E-mail: The Honorable John Whitemire

      The Honorable Fred Hill
      State Representative, appointed
      State Capitol, Room 1W.3
      Austin, Texas 78701
      E-mail: The Honorable Fred Hill

      The Honorable Judith Zaffirini
      State Senator, appointed
      State Capitol, Room 1E.12
      Austin, Texas 78701
      E-mail: The Honorable Judith Zaffirini

      The Honorable Vilma Luna
      State Representative, appointed
      State Capitol, Room E1.304
      Austin, Texas 78701
      E-mail: The Honorable Vilma Luna


       When do we write?

    32. Watch this site for future hearing or meeting dates.

    33. Watch for future alerts to [Write each of them a letter]


      6. Visit Your Legislators regarding funding issues:

      Locate your legislators

      Meeting with aids is helpful, too. They are often your best avenue for support. They help make schedules and call attention to particular issues. Don't be afraid to call on the telephone for information or to share new facts, etc.


      7. Share your information:

    34. Encourage others to help effect changes necessary for all to have services and options

    35. Send them the petition, ask that they read it carefully and sign if they elect to do so

    36. Alert them to hearing dates, encourage them to go

    37. Help those who will be using the services to become strong self-advocates



      8. Stay informed! Ask the Experts:

      Marty Skinner, LMSW-ACP, ACSW
       Program Director - MR Community Outreach (was MHMR of Tarrant County- Essential Services)
      1300 Circle Drive
      Fort Worth, TX 76119
      Phone: (817) 569-4016
      Fax: (817) 569-5474
      E-mail: Martha Skinner

      Kathryn Craven, P.C.
      Attorney and Counselor at Law. Very strong advocate for those with disabilities. Very knowledgable about those with disabilities, the services and resources avaiable as well as well versed with Special Needs Trust and Wills to protect the benefits for those elegible for SSI, SSDI and Social Security.
      1518 8th Avenue
      Fort Worth, Texas 76104
      Phone: (817) 923-5557
      Fax: (817) 922-9234
      E-mail: kcraven@kcravenlaw.com
      Website: http://www.kcravenlaw.com

      Lifepath Systems/Mental Retardation Services Collin County
      Mary Fredericks, M.S.
      PO Box 828
      McKinney, TX 75070
      Phone: 972-727-9133 Allen, TX
      E-mail: Mary Fredericks
      Crisis Line: 866-260-8000



      Planning the Future:


      0 Planning Handbook for Persons with Disabilities
      Website: http://www.thearc.org/publications/futureplanninghandbook.doc

      To add an individual with disabilities to the CLASS list so they may eventually receive HCS (Home and Community-based Services) funding.
      Telephone: (877) 438-5658

      How to qualify for a disability:
       Website: www.socialsecurity.gov/dibplan/dqualify.htm

      How to apply for a disability:
       Website: www.socialsecurity.gov/dibplan/dapply.htm



      Public/Government Agencies and Resources:

      Medicare
       Website: www.medicare.gov

      HHSC - Texas Health and Human Services Commission
       HHSC is comprised of several agencies, mostly legacy Texas Department of Human Services, Eligibility/TANF/Food Stamps/Medicaid.
      Website: www.txstars.net/servlet/HSGServlet?page=home

      D.A.D.S. - Texas Department of Aging and Disability Services (was TDMHMR)
       D.A.D.S. is comprised of legacy TDMHMR, MR Services; Texas Department of Aging; Texas Department of Human Services - Long Term Care Services.
      Website: www.dads.state.tx.us

      Texas Medicaid
       Website: www.hhsc.state.tx.us/medicaid/index.html

      Texas Rehab
       Website: www.rehab.state.tx.us/services.html

      Texas Department of Aging and Disability Services (was TDMHMR)
      State of Texas agency, part of Texas Health and Human Resources Commission
      Website: www.mhmr.state.tx.us/



      Services for ALL:

      I am Martha Kate Downey. My family and I live in Euless, Texas. We have a daughter who is 22 and has autism. She is active in her community and needs community-based services, those funds which follow the individual. If the Medicaid Waiver waiting list continues to be under-funded as it is today she has at least a decade before she may receive those funds and live independently. Not an easy pill to swallow for Kate and her friends who have worked to gain the skills to live as independently as possible.

      I once met a family whose last name was Smith. They were a dysfunctional family. Another family I met was named Jones, they were a happy and healthy one: Therefore, all families with the last name of Smith are dysfunctional, and all families with the last name of Jones are healthy and happy ones. Is that a reasonable deduction? How can we, then, make the same illogical generalizations about all housing or all services being either good ones or bad ones for those individuals needing care.

      You have heard stories of those who had negative experiences in group homes, other stories of those who had negative experience in state schools. We hear on television and read in our newspapers horror stories of the care withheld from those with disabilities in their own family's homes. A place of residence is only as safe, as good, as positive as the caregivers in the residence at that exact moment. These arguments regarding who can provide the best care have kept us distracted from the actual problem: Proper funding for all those having exceptional needs, including those who are aging, need accessible guardians, in need of foster care, or protection.

      There is a need for state schools and other facilities like them and there is also a need for community-based services. In addition to caring for individuals with very limited cognitive capacity, state schools currently care for those having cognitive delays who need long term medical care, or those having significant behavioral disorders in need of long-term placements with very close supervision. Many of these individuals with mental retardation needing long-term care are placed in state schools after leaving a state hospital or are sent by the courts if they are deemed to be of danger to themselves or others.

      There will always be a need for facilities which care for individuals with those significant needs. Most of the current community-based services are not yet able to care for those individuals due to insufficient funding which determines appropriate facilities and staff. According to a study prepared for Advocacy, Inc. in August, 2004 Texas ranked 51st among the states in the rate at which it furnished community-based waiver services. And in 2003, Texas ranked 47th among the states in the rate at which it furnished Medicaid long term services (the combination of HCBS waiver and ICF/MR services). We're heading into an even greater crisis, if that is possible, as this population ages.

      The special needs population is living longer than ever before and developing additional health care needs. "Regular" assisted living centers will not have the knowledge to care for a person with cognitive delays as well as aging disorders. Some of those who are choosing to live in community-based housing today may one day need the more specialized care that residential programs may provide. Their needs will change just as surely as everyone's needs change through their life time.

      In the past, we have fought over the sparse funds set aside for those having disabilities. We thought the only way we could get the funds needed for our programs was to take them from someone else's program. It is time we acknowledge that ALL of our programs need adequate funding. We can't rob Peter to pay Paul... Peter's broke! We need proper funding for all of the programs.

      It has been long-time tradition of which the legislators of Texas are quite proud that they require the least amount of taxes in the United States. It doesn't seem to matter to them, that in so doing, they are therefore providing the least amount of services to those in need. The legislators are not properly reflecting Texans' values of generosity and responsibility for fellow citizens in need. During the recent world crisis, the citizens of Texas freely gave enormous amounts of money to Tsunami victims (without benefits of either tax receipts or even thank you notes!) It is quite apparent that Texans greatly value human life and their compassion is greater than their greed.

      There is no longer time to battle about which programs will receive funding. It is now time to work together to insure that all of those needing services will have the opportunity to receive them. We are calling for the funding of all programs provided by DADS and other HHSC in the state of Texas which serve those who have disabilities or are elderly.

      In the past, those services receive from the AAA have been adequate and well accessed. It is imperative that we do not move funding from programs working well to other less funded programs. Then there will simply be one more group of Texas citizens in need of better services.

      This may seem like a tall order to some legislators, but if most other states provide sufficient services for their citizens, I would think Texans could arrive at a solution to the dilemma as well. If we can't do it well, can't we at least be average!?

      Martha Kate Downey
      February 9, 2005


      Join Steps to Support for All:

      In order that change take place, it is important that the legislators see a united mission. The mission of this coalition is to unite all those individuals and organizations which provide support to those having disabilities. Each organization which participates in the coalition will have it's own particular stand on issues and population it is servicing - that is important to maintain, but we all share in the common goal of working to ensure proper funding for services. By joining together, we share knowledge and strength in numbers as we work to effect critically needed change. Please join our association in our call for critically need funding of the programs and services already in approved by our legislators. Those programs by the Department of Aging and Disability Services, as well as those which help individuals in other HHS systems which service those with disabilities must receive sufficient financial support to be viable services to the eligible recipients. A program or service without appropriate funding is not a program at all, just a pipe dream. It is time to do more than dream.

      I would like to join or learn more about Steps to Support for All
      I would like add information to this site

      For further resources for those with special challenges, click on the "Resources and Links" button on the left of this page.



      Copyright © 2007, All Rights Reserved

      If you have information you like to have added to this site, or questions regarding this program, please write to: Martha Kate Downey, 505 Anthony, Dr. Euless, TX 76039 or send an email to mk@mkdowney.com