Chapter 10

CHILDREN WITH SPECIAL NEEDS

One of the most challenging aspects of parenting can be the realization that your child will need assistance throughout their lifetime because of developmental disabilities, a mental or physical condition, or an illness or disability that occurred later in life. Advances in medical care now enable many people who face challenges, because of their physical or mental condition, the opportunity to live into adulthood and old age. In most instances, there are options that allow persons with disabilities to live independently in the community with appropriate supports. However, if you are a caregiver to your adult child, you will want to plan for the possibility that you may not always be able to meet his/her needs or ensure your child's welfare.

With special education, employment opportunities, housing options, medical care, supportive services, financial support and legal arrangements in place, your child may have the tools to be as independent as possible. Membership organizations that work to improve conditions for persons with disabilities might also be able to help.

It's the Law

The Americans with Disabilities Act (ADA) is probably the most important law dealing with the rights of persons with disabilities. The ADA prohibits discrimination on the basis of disability in employment, in programs and services provided by state and local governments, in the provision of goods and services provided by private companies, and in commercial facilities.

Signed into law on July 26, 1990, the ADA contains requirements for new construction, alterations or renovations to buildings and facilities, for mass transportation facilities, and for improving access to existing facilities of private companies that offer goods or services to the public. It also assures public access to state and local programs. The ADA also covers effective communication with people with disabilities, eligibility criteria that may restrict or prevent access, and requires reasonable modifications to discriminatory policies and practices.

The Disability Rights Education and Defense Fund, Inc. (DREDF) works to ensure the civil rights of persons with disabilities.

The Advocacy and Protection Program (A&P) in each state provides advocacy, information and referral to persons with developmental disabilities. The A&P offers consumers and families information on resources in their state.

Housing and Living Arrangements

Can the care recipient live independently? Attendant and Personal Care services can promote economic self-sufficiency, independent living, and inclusion of people of all ages and virtually all disabilities into society. Many consumers and families want the option to select, hire, and train their own caregivers, and to select among services they need for independent living in their homes and communities.
Your local Community Developmental Disability Organization (CDDO) or Independent Living Center (ILC) can provide information on these services. CDDOs are organizations that are designed to assist individuals with mental retardation or who are developmentally delayed. ILCs are advocacy organizations that are generally managed by individuals with disabilities.

• If your child lives with you, can he or she continue to live in your home if you are not there? Will this require:
  • Changes in the physical layout of the house?
  • A companion and/or supportive services?
  • Arrangements for payment related to the house and the supportive services?
• Is shared housing, living with other family members, or a group home a better option?
• Another option is Section 811 housing designed for persons with disabilities who are between the ages of 18 and 62.
• Does your child have the best form of mobility or are there new devices that can help to improve his or her access?
• Can your home be modified with ramps or motorized stairclimbers?