A Model Texas Project

The ideal support system for the older population with developmental disabilities builds on a foundation of individualized preferences and choices that reflect the person's cultural, environmental, and life experiences. These supports include remaining active in the neighborhood and the local community for as long as possible without experiencing isolation, abuse, neglect, or losing control of one's later life choices. This includes the ability to communicate, "I want, I like, I need, or I don't want, I don't like and I don't need!" The community has many varied resources that may open a new world of opportunity for involvement of the older person or persons who are transitioning into the later life years. The choices and options should be self-selected and preferred including social, recreational, and leisure activities. Many older people with developmental disabilities have demonstrated the ability to grow and learn when provided the chance to participate in self-selecting programs and services that include both formal and informal supports. The older population's needs include: homes, medical services, social, recreational, and leisure activities, opportunities for work if desired, friends and family, on request transportation, and to interact in decisions affecting their futures. The majority of aging and older people with developmental disabilities are not in the formal service systems.

Older family caregivers have a different set of needs for supports and services. Family members need assistance in learning what services are available for both themselves and their family member with developmental disabilities. Elderly and aging caregivers need to understand many different areas including wills and trusts, networking, understanding their child's aging processes, and how to access available and appropriate support services and programs.

The Texas Model Project

The major goal of the Texas Model Project is:

To develop an integrated service system that older people with developmental disabilities and older persons caring for persons with developmental disabilities can access from single or multiple entry points.

All of the Area Agencies on Aging in Texas have in place a core of services and staff that can impact the lives of aging and older Texans with developmental disabilities, elderly parents or family caregivers who may be responsible for grandchildren with developmental disabilities. Support coordination may be available through their core services. This core is:

• case management;
• intake and assistance;
• benefits counseling;
• the network of volunteer ombudsman.

These community providers may be the first line for coordinating supports and services to the current invisible population. However, to assure all appropriate supports and services are accessible, the Texas Model Project must create and maintain a working partnership with other vital community services and programs. These include the local MHMR agencies, human or social services, private providers, and any and all other generic support systems that may be needed on an individual basis at anytime. The current service systems of the local community will determine what agencies are available to be involved in the Coalition membership. Working together and sharing information, experiences, and expertise as well as referrals and resources develops this working community partnership.

The model builds this system on the resources and supports in the community when available or seeks to develop new supports as necessary by reaching out to other agencies and initiating interagency activities over a period of months. The model should concentrate on four basic foundation activities at the start. These activities are:

1. Developing on-going cooperation and collaboration relationships between the aging, developmental disabilities service agencies and other support services at the local level.
   
   
2. Identifying community resources and gaps in the support system and interagency training requirements in the local project areas, and develop local plans of collaboration.
   
   
3. Cross training key local coalition members to understand and react to the support needs of older people with DD, and older people caring for person with DD.
   
   
4. Conduct a local need assessment for the seniors with developmental disabilities and their families in the local community, which will also identify support needs and gaps in service delivery.

There are no expectations to begin supports and services to the aging and older population with developmental disabilities during the initial phase; however, experience has shown that these do happen as a natural progression to the coalition in some communities. The second phase of the model project should focus on continuing to build on the four activities and expand to include:

1. Continue on-going cooperation and collaboration relationships of the work group at the local level.
   
   
2. Invite additional public/ private advocacy groups to participate in and support the coalition activities and service systems integration goals.
   
   
3. Create an awareness for the key local aging and dd providers to learn about individualized permanency plans or person centered planning to assure the target population has the opportunity to make choices in the later life years.
   
   
4. Develop outreach and intake initiatives to create individual supports plans for older people with developmental disabilities and their family members on an as needed basis.
   
   
5. Provide seniors with DD or older family members who are caring for persons with DD access to existing aging programs now available (senior centers, meal sites, etc.) and other age appropriate support services available in the local community.
   
   
6. Develop volunteer and other generic community resources to assist families to achieve the goals of social supports and financial security for their aging adult children with developmental disabilities. These services may include: pro bono legal, estate planning, and person-centered planning for the time the care giving responsibility is no longer provided by the parent or family members.

The Model in Action

At the conclusion of the second phase or the second year, the Model should have a good working relationship among all the coalition agencies. When a call is made to these agencies for assistance or information by or for an aging Texan with developmental disabilities, family members, or others, information will be collected and an intake or referral will be made to initiate the access to supports and services that are individualized and appropriate. It is at this point that additional training of front line staff is necessary to keep the effort moving forward. The Model Project will be proactive rather than reactive to crisis situations and emergencies. However, not all events will ever be planned completely in advance but the "invisible population" will become visible within the community and be provided new options and choices in the later life years.

Expected Outcomes of the Model Project:

Implementing an aging and developmental disabilities model project will have the following impacts:

• Develop opportunities for aging and older individuals with developmental disabilities and their families to participate to their full ability in the later life year's activities and supports to access their community's resources and activities. Retirement, volunteer work, or participation in age appropriate activities of their choosing are just a few of the options that could be available to this target group.
  
  
• Coalition efforts will improve access to the quality of care for people with developmental disabilities by training care professionals in the needs of both individuals and families.
  
  
• Coalition members, policy makers, and program administrators will be made aware of the unique needs of the aging and older population with MR/DD in the state through training, information sharing, and public meetings where program staff, advocates, aging individuals, and family members express their needs and concerns.
  
  
• Improve the outreach and supports to older families, including underserved minority and rural families, who are caring for a relative with developmental disabilities, by focusing on the local aging service systems, mr/dd agencies, social services, and the generic resource agencies.
  
  
• Training, information, and assistance for families for continued support after death or the inability of the parents to continue day to day formal and informal supports. For example, real estate and family homes are major resources for aging and elderly people; however, elderly homeowners nationwide have rarely used the reverse mortgage option to convert their dwelling into income for a fixed time period or life, and to stay there. Very few families have made necessary arrangements for futures planning, wills, estate plans, trusts, or advance directives for health care.
  
  
• Interagency service coordination and service delivery will be supported by establishing working relationships to flow across service systems and enhance access to aging network services and programs for older adults with developmental disabilities.
  
  
• Cross training should focus on professionals working in the field of aging, developmental disabilities, and other generic services. The training will assist staff to understand the aging processes, needs of aging and older persons with MR/DD and family caregivers, and how to collaborate to access community programs and resources in a timely way.

Additional Activities and Projects that may be considered in the third year and beyond.

1. The population with Down syndrome who may be experiencing dementia of the Alzheimer's type. Research on this is being conducted at the University of Texas at Houston. Some of the projects may wish to explore connecting to that project.
   
   
2. Texas has a significant number of individuals who have exceeded the life expectancy of 55 years; accessing non-traditional funding and existing programs could benefit these individuals and their communities. The McKinney Homeless Act's eighteen-month transitional housing projects funded through HUD may be a viable solution to lack of money to support this population today.
   
   
3. Exploring individual intergenerational support systems linking aging and older persons with and without disabilities with small, single parent families to share a residence and provide supports to one another in a rural community by piloting a demonstration model using the community reclamation program with HUD.
   
   
4. Cooperative efforts could be explored for distance learning and training of staff in rural and remote areas of the state to better address the needs of this growing population. Funding may come from the local community or from any of a large number of foundations located in Texas.