Mental and physical health and safety

Individuals who are deafblind face many challenges in managing their mental and physical health. While, generally speaking, they may access healthcare through Medicaid or Medicare, finding providers who are knowledgeable about deafblindness can be incredibly difficult. There may be minimally available interpreters, co-navigators, and interveners which makes it challenging for deafblind individuals to receive this essential accessibility service for necessary physical and mental health care. Simple things like making an appointment, understanding any disease or condition they may have, recognizing and reporting symptoms, understanding medications, and utilizing preventive care strategies can become challenging.

Some of these individuals have major and multiple health challenges that result in frequent and ongoing hospital stays. With accessibility services in place, if it’s found the individual is unable to make decisions for their own health care needs and do not have a designated guardian to help oversee these needs, they are at the mercy of the provider.

Individuals who are deafblind face greater risk related to physical safety and are more often victims of abuse than their nondisabled peers. This includes both physical and sexual abuse.

Support for access to services and the community

Though some individuals who are deafblind can independently manage most of their needs in their community, many need support for at least some of their needs. This may involve the use of an interpreter or a co-navigator.  Some individuals need responsive, intensive support of an intervener or one-on-one support person. Without these support providers access to most community services and activities is an impossibility.

Paying for these services and finding providers most often comes through programs like the Texas Medicaid Waiver Programs for Children with Disabilities, specifically for individuals who are deafblind. Below are links to a number of these resources:

• • Deaf Blind with Multiple Disabilities (DBMD) waiver
  • Texas Health and Human Services Office of Deaf and Hard of Hearing Services
  • Blind Children’s Vocational Discovery and Development Program
  • Texas Workforce Commission Vocational Rehabilitation

Most of us use paid support providers for various things in our lives like repairing the car, caring for children, managing our finances, or even meeting a potential romantic connection. However, we also rely on support from friends and family for many of these needs. This is also true for the individual who is deafblind. Building a robust circle of friends throughout the lifetime of the individual and of the family is often key to a high quality life. To learn more about how this can be done visit Circle of Friends and PACER’s National Parent Center on Transition and Employment.

Housing

Many individuals who are deafblind will choose to live at home with family member while others choose to live in group homes, supported living apartments, or living independently. There is no one-size-fits-all answer to housing as the individual ages. Like all of of us, what works and one point in life does not work at another point in time. Finding and maintaining a home can be challenging, and with support and creativity, this is something every individual who is deafblind can accomplish. Ideal housing would include features that creates a safe and enjoyable living space. This would include accessibility features like vibrating alarms, special lighting, high-contrast design, mobility design features and more.

To learn more about housing options, check out this video from Navigate Life Texas.

Employment or meaningful activity

Everyone, including individuals who are deafblind, need meaningful activities in their lives. Some will participate in paid employment, though employment rates for people with disabilities remains very low. 

Individuals with significant physical and intellectual challenges and who may not choose to access paid employment, have found fulfillment and pleasure in activities related to volunteering, recreation, and leisure. These activities are important for all individuals who are deafblind. Helping to create and support access to these types of activities is an important feature in planning for life beyond public school. Participating in organizations for individuals who are  deafblind (e.g., American Association of Deafblind, Deafblind Camp of Texas) or getting involved in local community activities and organizations greatly enrich the quality of life for individuals who are deafblind. For some individuals, participating in day programming through a local Lighthouse of the Blind or a program like Touch Base Center for Deafblind in the Houston area helps to meet these needs.

Connection and contribution

The key to happiness, success and fulfillment lies in our connections to other humans and a sense of contributing to others. This can happen in big and small ways, depending on the desires and stamina of the individual. Social and religious organizations, community gathering places such as gyms and recreation centers, and participation in travel and social events can greatly influence the sense of connectivity an individual who is deafblind feels. Isolation impacts mental health for all humans. Supporting the individual who is deafblind in learning skills that will help them build and maintain social circles is very important to their overall health and safety. Want to learn more?  A number of great tips from fellow parents can be found at Navigating Life Texas website’s Friendships after High School page.