Chapter 10: Parental Advocacy
Tools for Parents of Children with Special Needs
By: James J. Messina, Ph.D., CCMHC, NCC, DMHCS
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A. What is a parental advocate?
As parents of children with special needs it is very important to understand your role as a parental advocate for your children. An advocate is one who pleads the cause of another and who defends or maintains a cause or proposal. Parental advocacy includes efforts to:
- Have all of the needs of target children met.
- Keep current about the latest advances, technology, and research innovations regarding children's disability, treatment, protocols, and potential.
- Get the best care and services available for children with special needs.
- Monitor all services, professionals, and programs offered to target children.
- Create a team approach with those involved in target children's lives and care
- Have target children served in a least restrictive environment.
- Expose target children to as normal a lifestyles as possible.
- Assist target children in reaching their highest potential.
- Stimulate community concern and establish new services to fill in the gaps for target children's care.
- Ensure lifelong support, nurturing, and habilitation of target children.
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B. In advocating for their target children, how are parents visible?
You will need to advocate for your children in a variety of environments and settings. It is important for you to recognize your different goals for each setting. What follows are just some goals which you as parents will need to maintain as you advocate in the community for your children with special needs.
Education:
- Enroll children in existing infant and pre-school programs
- Enroll children in public school early intervention programs
- Have knowledge of state and federal laws and procedures involving education for handicapped and exceptional students
- Participate in Individual Education Program (IEP) staffing on children
- Monitor placement and adequacy of education programs for children with special needs
- Schedule conferences and other contact with teachers and school personnel involved with your target children
- Choose education programs designed for lifelong self-sufficiency and employment
- Include and mainstream target children into as normalized environments as possible and monitor progress
- Enroll children in "typical" activities such as: after school care programs, summer camp, boy scouts, girl scouts, church youth groups, Boys and Girls Club, YMCA and YWCA, dance class, gymnastics, karate, etc.
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Employment:
- Monitor public school pre-vocational, vocational training and transitional offerings
- Monitor career education and career planning offered in school
- Monitor decision making of target children concerning college or trade school
- Ensure target children are linked with State Office of Vocational Rehabilitation for training and employment placement assistance
- Ensure that children have utilized state employment agency services
- Ensure that if needed that target children are linked with sheltered workshop or a supervised or supported employment setting prior to graduation from high school
- Ensure children are assisted in obtaining on-the-job training, if appropriate
- Ensure children have knowledge of resume preparation, filing job applications, and answering want ads
Housing:
- Teach target children to care for their own rooms
- Teach target children to do household chores such as laundry, dishes, dusting, vacuuming, taking out garbage, keeping environment sanitary
- Help target children to get and to set up their own apartments
- Establish a trust fund, for housing needs for later in life
- Link with other parents of target children to create a foundation to establish a group home or apartment complex for supported living, if needed
- Enroll children in group homes, if and when needed and if available
- Enroll children in a boarding home, if and when needed
- Enroll children in foster-care homes, if and when needed
- Enroll children in a supported living or semi-independent living apartments, if appropriate
- Assist children to get into rent-subsidized apartments, if appropriate
- Utilize respite care, if needed
- Utilize emergency housing for children, if needed
- Teach children to use telephone, dial emergency numbers, and respond in an emergency
Food:
Teach target children to:
- care for self at table
- cook nutritious meals
- plan a healthy diet with balanced meals
- purchase food
- acquire and use food stamps, if needed
Finances:
Teach target children to:
- identity money denominations
- make change
- make independent purchases
- budget money
- sign up with Social Security Income (SSI) or Social Security Disability Income (SSDI)
- recognize the need for gainful employment
Transportation:
- Teach use of public school transportation system
- Teach use of existing public transit systems
- Link target children up with existing special needs transportation system
- Help children to learn how to drive a car if appropriate
- Help children to get operator's license if appropriate
- Help children to budget for a car, insurance, gas, and maintenance if appropriate
Medical/Dental:
- Teach target children the benefits of medical and dental care
- Monitor medical and dental needs of children
- Ensure target children receive quality medical and dental care
- Link children with appropriate medical specialists
- Enroll target children with Medicaid, Medicare, or other public medical coverage, if available
Legal/Governmental:
- Teach target children their legal rights if appropriate
- Teach children the workings of the legal system
- Link children with appropriate legal services
- Teach children how state and federal laws can affect their welfare
- Teach children how to lobby for effective legislation to ensure their quality of life in the community, schools, and on the job
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C. What hierarchy of needs do parents advocate for their children?
Parents advocate for needs that require extensive community support and outside agency cooperation. They require cooperation and open communication between multiple community players in a child's life. The parent-advocates work for the target children, gaining appropriate services and monitoring these services. In recognizing that parents cannot be completely responsible for or have available all services children will need in life, it is imperative for the parent-advocates to provide the children appropriate information and referrals to existing service agencies. The parent-advocates work for easy access to services for the target children. They accompany the children to the sites, when necessary, to expedite service referrals and provide needed care.
Parents as advocates address the survival, security, love, esteem and self-actualization needs of their children with special needs, through interventions and strategies which distinguish them as advocates, and very different from the traditional parent model. What follows is a look at these needs and how parents advocate for each of them:
Survival needs:
Parent-advocates recognize that the priority needs of the children are survival ones. Survival needs include:
- the acquisition of food (e.g., food stamps) and its preparation (e.g., cooking classes),
- acute medical and dental care (e.g., Medicaid, public health),
- the availability of financial resources (e.g., SSI, SSDI) to give the children sustenance during periods of rehabilitation,
- the utilization of public and agency transportation systems (e.g., bus-riding training),
housing, and
- mental and/or physical rehabilitation services.
Survival needs include the most basic needs, yet without direct parental advocacy or intervention these needs may never be met. The powerlessness of target children is seen most clearly when they are excluded from attaining even the most basic of survival needs. Empowering the target children to satisfy their needs for food, shelter, clothing transportation, and medical care is what parental advocacy involves at the survival-needs level.
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Security needs:
Security needs are met when the target children feel a sense of security by satisfying their basic needs, not just for today, but for tomorrow, and the days beyond. Advocacy in the security-needs area centers around giving the children ready access to those services that satisfy their survival needs. Parent-advocates work to ensure that children are treated as individuals. Advocacy efforts in the security needs area are addressed in promoting services that secure the ongoing basic needs of their children with special needs.
Love needs:
Love needs arise once individuals experience their own uniqueness, secure from threats to their identity. Love needs are expressed as individuals reach out to others, both in groups and on a personal level. Advocacy, when focused on the love needs of target children, is involved with the promotion of support systems for these children.To overcome the lack of existing support systems for target children, parent-advocates promote the establishment of peer support systems that take on both a social and a ''self-help'' dimension for their children. To relieve tensions in their personal families, parent-advocates support the establishment of ''family'' support groups for themselves and other family members. These ''family'' support groups help in overcoming alienation and facing common problems. To ensure their children's access to social networks, parent advocates work with faith communities and volunteer groups to create more natural supports in the community. (Example: Special Olympics) Parent-advocates work with ''significant others'' in their children's lives to help them become more sensitive to the target children's needs. Helping these children to reach out and to be reached by others is the goal of advocacy efforts toward the love needs of children with special needs.
Esteem needs:
The esteem needs result after individuals have experienced the supportive energy of reaching out to others. It comes on the heels of a sense of being empowered as individuals. Autonomy, self-worth, and value as a person are characteristic esteem needs. Parent-advocates develop strategies so that as the children become more secure and responsible, they can begin to direct their personal destinies. Parent-advocates assist the community to accept their children. Parent advocates help existing agencies through the promotion of increased systems coordination and systems progress. Through such intervention, community values can be altered by enlisting a coalition of various well established, powerful community groups. Value change accomplished through the efforts of these parent-advocates can result in increased housing, social, religious, leisure, and employment opportunities for their target children.
Parental-advocacy for the esteem needs of the target children is a process entailing visible group-oriented efforts. Such advocacy requires a long-term commitment marked by slow gains, some failures, but finally, some genuinely positive change. Such advocacy supports the rights of the target children to as much of life's blessings as is possible.
Self-actualization needs:
Using an advocacy approach, self-actualization needs are the brightest and most rarified in the hierarchy of needs. Once individuals have achieved full self-esteem, they do not need others to advocate for them. They are ''together” enough to advocate for themselves. In such cases the parent-advocates become consultants to target children's sponsored advocacy efforts.
Such target children's controlled efforts include:
- target children-controlled and operated businesses,
- target children self-help advocacy and support groups,
- target children rights groups,
- total independent living and
- full competitive employment.
The self-actualization needs are both idealist goals and visions. These needs are ones which parent advocates can identify with and work toward for their children
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E. What are the different form of advocacy which parents advocate utilize?
Parental advocacy has many faces. What follows are different faces or strategies of advocacy that parents of children with special needs can utilize in their efforts to promote the quality of life for their children.
Linkage:
The primary objective of linkage is to connect target children with appropriate sources of help for the problems indicated. Linkage may take the form of simple communication, information, or referral to an agency. Linkage is the enabling of the target children to utilize human service resources by helping them negotiate the system. It is also advocating the rights of the children if and when they have been denied services.
Brokering:
The major thrust of brokering is to facilitate the actual physical connection between the target children and the services with the potential for resolving or reducing their problems. It is the ability to help these children finesse the service delivery system, which can be relatively unaccommodating. Some manipulation may be involved in preparing the children and/or the potential providers for a positive contact. This relationship assumes a standard procedure or a negotiable situation and may include discussion, bargaining, and/or compromise.
Child advocating:
Basically child advocating is the successful linkage of a target child (who has been rejected) with the appropriate services. The child-advocate literally stands in the place of the child to bring about a change in the rejecting organization's policy in favor of the child involved. This is a confronting relationship. Usually a formal appeal based on legal or human rights is presented to accountable authorities. Taking a suit through the appellate court system is a possibility in child advocacy.
Mobilization:
Working to fill the gaps within the delivery system serving the target children by developing or creating resources, i.e., programs, services, organizations is mobilization. The primary objective of mobilization is the adaption of services for existing consumers. This can bring services to potential consumer groups or classes by changing inequitable or discriminatory practices, regulations, policies, and/or laws. This can create new human service resources, services, or programs.
Activating:
The purpose of activating is to develop new human service resources to meet changing social needs. Activating may involve defining and communicating specific community needs to provide the catalyst for the formation of self) help programs. Definition of problem, motivation of interest groups, and consensus of opinion leading to organized solutions of community problems are objectives of the activator.
Systems advocating:
The desired result of systems advocacy is to change or adjust the framework of the service delivery system to accommodate individuals, such as target children, who would otherwise be rejected or denied. Systems advocating may involve making a case or proposal. Rebuttal is expected. Preconceived changes in practices, rules, regulations, policies, or laws is the desired outcome. Prevention and treatment as well as rehabilitative measures are the turf on which systems advocating operates.
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F. What are the steps involved in becoming a parent advocate?
You are at the end of this book. Hopefully you are charged up and ready to become a parental advocate for your child with special needs. If this is true then these next steps are for you.
Step 1: In order to become an advocate for your target child, you need to become informed about the advocacy process. Answer the following questions in your journal:
- What is your definition of advocacy for your child?
- What are the issues for which you have already had to advocate?
- What are needs still facing your child for which you will need to advocate?
- How do you advocate for your child's hierarchy of needs?
- What assistance is available to you in your advocacy efforts?
- How informed are you about the schools, programs, agencies, and other professional services available to your target child?
- How comfortable do you feel in monitoring policies, procedures, and practices of agencies, schools, and professionals working with your child?
- What people in your community are you linked with in your advocacy efforts?
- What additional knowledge, information, and data do you need in order to be an effective, efficient, and productive advocate?
- What are your feelings about being your child's lifelong advocate?
Step 2: You are now ready to make a decision regarding changes in your behavior required for better child advocacy. Answer the following questions in your journal:
- How comfortable are you in confronting a professional if you disagree with what is being done for or said about your child?
- How easy is it for you to assert yours and your child's rights when you perceive them to be ignored or not respected?
- How willing are you to monitor the legislation, policies, and development of services for your target child?
- How comfortable are you in working with bureaucracies, attending meetings, and working in the slow-moving decision-making process?
- How willing are you to lobby local, state, and federal politicians to alter, develop, or change laws and regulations concerning services and the quality of life for your target child?
- How capable do you feel in being able to mobilize others in your community to come together to improve services and community opinion concerning your target child?
- How willing are you to become educated in assisting to your child reach his fullest potential?
- How willing are you to work with other parents to develop new services and programs for your child?
- How willing are you to get involved in fund raising for programs that serve your child?
- How capable do you feel as an advocate in addressing the lifelong needs of your child?
Step 3: Based on your answers to the questions in Step 2 you will need to develop or alter the following behavior patterns to become an active, effective advocate for your child (list in your journal):
Step 4: If you remain unclear about your role as a parent advocate, return to Step 1 and begin again.
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