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The first thing to note about the Surrogate Decision Making (SDM) Program is that it is designed with the intention of being helpful for those individuals who need assistance making decisions. Before this program nobody was certain who would give consent for example for a psychotropic medication if the person needing it did not have the ability to give informed consent and did not have a guardian. The responsibility often fell to family members, ministers, or even the physician in an emergency setting. The IDTeam would meet, review and pretty much agree with whatever was being ordered. While I do not know specifically of any cases where this lead to abuse of a person, I can certainly see how it could for the convenience possibly be abused.
The SDM Program was put in place and the responsibility, as it is today, to determine whether a person living in an ICF/IID could give consent usually fell to the IDTeam. The steps to proceed are simple:
1. The IDTeam is notified of any needing consent.
2. The IDTeam meets and assigns an assessment to be completed (Surrogate provides them here)
3. Once the assessment is completed the IDTeam reviews it and makes a decision.
4. If the person is able to give consent, then he or she does and the process continues per regulations (usually to the Speciality Constituted Committed or the Human Rights Committee)
5. If the person can not give informed consent, did not have a legal guardian, then the process of the program started for psychotropic medications.
The Up side of the program is obvious. There are volunteers, many from the ICF/IID field, who meet together with no interest in the facility where the person lives. If you are interested in becoming a volunteer, see the website (Website) They review the paperwork, meet the person, ask questions, record the meeting, and make a determination. Once the determination to give consent is made, they then decide how long the consent will be given for on an individual basis. The consent time frame can range from a few months (such as six months) to several years depending on the situation and questions members may have or concerns. Most seem to give about a year to two years for psychotropic medications. This is the up side because it removes the decision from the facility, helps ensure that medications are not used in an abusive manner.
The down side is the length of time it takes. The process, from start to finish with a consent in hand, can take anywhere from one to two months up to six months or longer. This is because the people working the program in Austin must ensure they have accurate and complete information to present to the volunteers who make the decisions. A facility can send in an application and supporting documentation and then receive a letter with one or two questions or as many as fifty or more questions depending on what the reviewer in Austin feels is needed. Once that additional set of questions is received, the facility must obtain the information, answer the questions, and send the information back either by fax or by mail. Emails with information, as of this writing, are not permitted due to the potential for the information being lost. During this process, the facility has, in the case of a psychotropic medication, to follow the standards which require a physician's order to be followed. Needless to say, without a valid consent, the facility is basically giving the medications to meet one standard (follow physician orders and meeting the needs of the person) while ignoring another standard (requirement to have consent prior to giving the medication).
The general rule in Texas has been to allow the facility to complete the paperwork, send it in, and implement the psychiatric medication with the IDTeam and the Specially Constituted Committee's oversight until consent is received- a process that breaks at least two federal standards when being implemented. In the area of other needs such as special dental surgeries, etc, the person has usually had to wait on the surgery. While there is an emergency process that can be implemented, it is not generally used for psychotropic medications or non-lifesaving surgeries. Texas surveyors usually look over the paperwork that has been submitted and allow the facility to slide on the standards since there is no way to meet both the Texas Surrogate Rules and the Federal ICF/IID standards. However, there have been some surveyors in the past who would not allow this standard to slide and have instead written a significant amount of deficient practices for the facility while the facility has no choice but to work through and wait for a SDM meeting (or hearing) date.
The Texas SDM Program only handles certain cases as listed on their website at SDM. On the positive side, an involved family member as defined by the link can make many decisions for their loved one. The only decisions that a family member can not make concerns the use of psychotropic medications or to implement a highly restrictive behavior procedure.
Ultimately the program is a lot of work to implement and use as it should be used when needed. The other positive side of it though is you have a great staff to contact (Contact) who will help you each step of the way. Dennis Tomlinson, M.Ed has been with the program for many years. Cathy Albaugh, R.N., and Marti Granger, R.N. work closely with Dennis and are always happy to help and answer questions. The program is always looking for volunteers and is always willing to work with facilities as needed across Texas. Don't hesitate to contact them, and if you have time and would love to help people with disabilities live better and informed lives then contact the program at their website: http://www.dads.state.tx.us/services/crs/surrogate/index.html
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