Because We Care

Introduction

One of the most challenging aspects of parenting can be the realization that your child will need assistance throughout his lifetime because of developmental disabilities, a mental or physical condition or an illness or disability that resulted later in life. Advances in medical care now enable many people who face challenges because of their physical or mental condition 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 needs or ensure his welfare.

With special education, employment opportunities, housing options, medical care, supportive services and 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) 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 assess 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 Protection and Advocacy Program (P&A) in each State provides legal representation, advocacy, and information and referral to persons with developmental disabilities. The P&A offers consumers and families information on resources in their State. To find out how to locate your P&A contact the Administration on Developmental Disabilities in the U.S. Department of Health and Human Services:

Below are questions for caregivers and adult children to consider:

Housing and Living Arrangements

Can you live independently? Personal assistance services (PAS) or personal care services (PCS) 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 select among services they need for independent living in their homes and communities. The availability of more consumer-directed PAS is making this increasingly possible.

Medicaid offices can provide information on the availability of funding for these services. There are different types of programs and funding that may be available in each state including Home Health Benefits, Personal Care Benefits and Home and Community Based Services Waivers. Consumers can inquire about their options under each program. The Medicare Program also provides for home health aide services. Consumers and families can get information on PAS, the different programs and funding sources for these types of services from the Protection and Advocacy Programs discussed in the “It’s the Law” section above.

Independent Living Centers (ILCs) are advocacy organizations that are generally managed by individuals with disabilities. To locate an ILC, consumers and families can click on ILC Links for a list of States with ILCs.

• 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 or special assistive (type in the word or phrase that describes the product(s) you want on this site)
  • A companion and/or supportive services?
  • If so, how will you arrange 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 housing designed for persons with disabilities who are between the ages of 18 and 62.

Mobility and Transportation

• Does your child have the best form of mobility or are there new devices that can help to improve his or her access?
  
  
• Have you modified your home for greater access, with ramps or motorized stair climbers?
  
  
• Can your child drive and, if not, can she or he learn?
  
  
• Can a van or car be modified for his or her use? (Check with your tax adviser to see if this may be tax deductible.)
  
  
• If not, are there special transportation services in your community that he or she can use? To find out, contact your State Protection and Advocacy Agency.

Keeping Up With New Medical Advances

In today’s fast changing world of medical and biotechnology it is more important than ever for you and your child to stay abreast of the latest findings and developments relating to your child’s condition. These can include the areas of nutrition and assistive devices as well as new drugs and medical technologies that offer improvements and even cures for diseases and conditions that were, only recently, considered to be largely incurable or untreatable. Perhaps one of the best ways to do this is to browse several key internet sites from time to time as well as special sites and to join organizations that are working to improve conditions for persons who have specific conditions and disabilities.

The Department of Veterans Affairs, which provides benefits and services to veterans who have service-connected disabilities and conditions. This site offers entrance into a large number of useful web sites that provide information on benefits for Veterans.

Education and Training

The Office of Special Education and Rehabilitative Services (OSERS) administers programs that assist in educating children with special needs, provides for the rehabilitation of youth and adults with disabilities, and supports research to improve the lives of individuals with disabilities.

Under OSERS, the Rehabilitation Services Administration (RSA) oversees programs that help individuals with physical or mental disabilities to obtain employment through the provision of such supports as counseling, medical and psychological services, job training, and other individualized services. RSA's major formula grant program provides funds to state vocational rehabilitation agencies to provide employment-related services for individuals with disabilities, giving priority to those who are severely disabled.

Individuals with disabilities and families are empowered and are advocating for equal rights, full inclusion in society, independent living, self-determination and employment. The movement toward Person Centered Planning has resulted in employment and other choices based on the specific interests, preferences and goals of individuals with disabilities.

University Affiliated Programs (UAP) across the country have been training individuals, families and professionals on issues such as Person Centered Planning and Self-determination. UAPs in each state can be located by contacting the Administration on Developmental Disabilities.

• If your child is older do you feel that every educational opportunity has been explored and taken advantage of?
  
  
• Can new assistive devices open opportunities for learning that were not available when your child was younger?

Today there are more special educational opportunities that could further enhance employment opportunities.

Making Financial and Legal Arrangements

If your child or relative does have disabilities that prevent him or her from being financially independent and secure or make personal decision-making difficult, you can investigate legal and financial arrangements which are discussed in the sections on Where Can I Turn for Help?; How Do I Hire a Home Care Employee?; and Who Will Care if I Am Not There?

Selected References and Readings

Federal Web Sites

The President’s Committee on Mental Retardation has an excellent listing of federal web sites relating to the range of agencies that assist Americans with disabilities as well as national organizations that serve Americans with mental retardation and developmental disabilities.

Go to the Federal Communications Commission Disabilities Rights Office for information about the communications technology revolution and the efforts being made to ensure that Americans with disabilities have equal access.

For information on assistive transportation technology projects, contact the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), State Technology Assistance Projects. For information on accessible transportation, consumers and families can contact their State Protection and Advocacy Agencies.

National Organization Web Sites

The National Institute for Children and Youth with Disabilities has an excellent web site. Click on State Resource Sheets for information in each state. There is information on how to access resources and advocate for appropriate educational supports and services.

Family Voices is an advocacy organization with a web site that covers a wide range of issues.

Visit the National Association of Developmental Disabilities Councils web site.

Another good web site is the World Institute on Disability.

The National Institute on Disability and Rehabilitation Research's information dissemination center provides information about advances in various disability research areas.

This Rehabilitation Engineering and Assistive Technology Society of America site offers some consumer oriented materials relating to assistive technology.

Commercial Web Sites

This site maintained by the American Association of People with Disabilities offers a listing of web sites -- many of them commercial -- that may be helpful—from magazines to trips for persons with disabilities.

There are numerous companies on the Internet that sell new and used specially equipped vans and other modified vehicles for persons with disabilities.

This Disabilities Search site includes organizations, university sites and some schools that serve the developmentally disabled. There is also a directory of conditions that are broadly termed developmentally disabled on this same web page.

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Where to Find Help