Introduction
Parenting comes with both rewards and challenges. When parenting a special needs child, certain challenges can be greater than average. However, there are also many resources available to help support parents and ensure children with disabilities have equal opportunities to thrive.
Legal Rights of Parents with a Disabled Child
Individuals with Disabilities Education Act (IDEA)
As parents of a special needs child in the US, one of your most important legal rights is ensured by the Individuals with Disabilities Education Act (IDEA). IDEA is a federal law that provides children with disabilities the same opportunity for education as children without disabilities. This includes the right to attend public school and receive individualized special education and related services designed to meet their unique needs.
Some key parts of IDEA include:
- The right to a free appropriate public education (FAPE) in the least restrictive environment. This means children have a legal right to an education tailored to meet their needs, along with support like occupational therapy, physical therapy, speech therapy, etc. They should be educated alongside non-disabled peers whenever possible.
- The right to a fair evaluation. Parents can request an evaluation at any time if they suspect their child has special needs. Schools must evaluate within legal timelines and consider information from parents.
- The right to an Individualized Education Program (IEP). The IEP is a written plan developed collaboratively by parents and educators that outlines goals, supports, related services, and where education will take place. It must be reviewed annually.
- The right to due process. IDEA provides formal complaint processes and hearings if disagreements arise over-identification, evaluations, IEPs, or placements. Parents can advocate for their child’s rights.
Overall, IDEA establishes parents as equal partners with schools in the special education process. It promotes participation and ensures children with disabilities receive the individualized support they need to achieve academic and functional success.
Americans with Disabilities Act (ADA)
While IDEA focuses specifically on education rights, the Americans with Disabilities Act (ADA) of 1990 provides additional important civil rights protections for people with disabilities, including children.
Some key parts of ADA include:
- Protection against discrimination. Businesses, state and local government programs, and services must be accessible to all. They cannot refuse service or segregate individuals based on their disability.
- Reasonable accommodations. Employers, transportation, and other public accommodations covered by ADA must provide reasonable modifications to allow individuals with disabilities access and participation when needed.
- Accessible design and communication. Websites, facilities, transportation vehicles, etc., must comply with standards for physical access and effective communication through methods like sign language interpreters.
Together, IDEA and ADA establish a strong legal framework to promote equality, access, and independence for people with disabilities across America. They empower parents to advocate strongly for their special needs children.
Rights of a Child with Special Needs
As with all children, those with disabilities have basic human rights too. The United Nations Convention on the Rights of Persons with Disabilities, which the US has signed, outlines some of the most fundamental rights that apply universally to people with disabilities regardless of age. These include:
Right to Life, Survival, and Development
All human beings have an inherent right to life. For children with disabilities, this means access to medical care, rehabilitation, early intervention, and other services essential for growth and quality of life.
Right to Express Views Freely
Children’s opinions must be heard when making decisions that affect them according to their age and maturity. For those with communication disabilities, alternative methods and assistive technology can help ensure their voices are included.
Right to Education
As mentioned, IDEA establishes the right to a free public education tailored to individual needs. In addition to academic subjects, life skills, and social development opportunities are important parts of education for children with cognitive or developmental delays.
Right to Community Participation
To the maximum extent possible, children should experience inclusion and interaction in daily activities outside of educational settings. Integrated playgrounds, sports teams, clubs, camps, and more promote social skills and community belonging.
Overall, recognizing these basic human and civil rights is essential to empowering children with disabilities and ensuring equal treatment and opportunities that uplift their inherent dignity. With support, most young people with special needs can lead rewarding lives as valued community members.
What to do if you find out your child has a disability
Getting a diagnosis that your child has special needs can bring a range of emotions like sadness, stress, and worry for the future. However, it’s important to remember you are not alone. There are local and national organizations ready to help you through the next steps. Here are some suggestions:
Connect with Your Child’s Doctor and Medical Team
Your pediatrician is a great starting point for discussing signs you’ve noticed, getting referrals to specialists, and learning more about your child’s specific condition. Ask questions and take notes to gain insight.
Contact Your Local School District
Call the special education department to inquire about the evaluation process and request an eligibility meeting. Providing consent allows a team of professionals to assess your child’s learning strengths and challenges.
Learn About Available Support Services
Connect with agencies like the Department of Vocational Rehabilitation, Head Start, or Early Intervention programs for children ages 0-3 years. They offer helpful therapies, family resources, and skill-building.
Join a Parent or Disability Support Group
Meeting other families experiencing similar situations can help alleviate feelings of isolation. Ask professionals for recommendations on local peer groups.
Seek Counseling or Coaching if Needed
A diagnosis of disability causes grief and adjustment. Speaking with a counselor or participating in parent training can aid you in positive coping strategies as an advocate on your child’s care team.
The key is not to shy away from available assistance. With comprehensive care and early intervention individualized for your child’s needs, you can build their skills and open doors of opportunity together.
What to Do If You Find Out Your Child Has a Disability
Contact Local Parent Organizations
From the moment a diagnosis is given, a caring community stands ready. Call local chapters of national disability advocacy organizations like The Arc, Autism Society, Down syndrome Associations, and others. Not only do they provide peer support, but they also offer education, social programs, and resources parents need.
Learn Strategies for Communication & Behavior
Ask professionals to recommend books, workshops, or coaches who can share methods that match your child’s profile. Small adjustments in approach or consistent use of visual schedules, sign language, or assistive devices can significantly help a child’s understanding and independence.
Connect with Other Families
One on one meetings or group activities with parents raising a child with similar needs allows you to share challenges, solutions and hope. Advocacy organizations typically match families upon request.
Plan for the Future
People with disabilities can lead happy, productive lives with the right lifelong support. Research guardianship and trusts, eligibility for Medicaid waiver programs, vocational training options, and more to empower continued independence into adulthood.
FAQ Section
1. What are some of the effects of a family who has a special needs child?
Families of special needs children face additional stresses like financial costs of therapies, scheduling demands, lack of respite care and social stigma at times. However, research also shows these families develop deep strength, empathy and gratitude. With a support system, positive outcomes include increased sensitivity, patience, sense of purpose and greater appreciation for life’s blessings. While more challenging, many families say raising a child with disabilities has made them profoundly richer people.
2. How do you tell if a child has a disability?
Developmental delays and disabilities can sometimes be harder to spot in very young children. Some potential signs include missing major motor skills milestones like crawling and walking; lack of speech at ages when others talk; not responding to names, not making eye contact, poor social interaction, and difficulty comprehending or following simple instructions. However, every child develops at their own pace, and minor differences are normal. Talk to your pediatrician if you notice any ongoing concerns, and they can refer you to specialists for evaluation. Early intervention is key.
3. How important is the role of the parents of a disabled child?
Studies show the involvement and support of parents is the single most important factor in a disabled child’s wellbeing and success. From providing medically necessary therapies in the home, coordinating complex care teams, and advocating for services at school and in the community, parents of special needs kids must wear many hats. They also make daily adaptations, show unconditional love, and teach life lessons despite communication challenges. A happy, secure relationship with parents or caregivers lays critical social-emotional groundwork and boosts a child’s confidence to reach potential regardless of limitations.
4. What are some common issues for special needs individuals?
Common issues vary depending on the nature of the disability. For some, physical impairments affecting mobility, self-care, and medical needs are a primary concern. For others, challenges may include learning deficits, cognitive processing delays, sensory processing disorders, autism spectrum conditions, or mental health issues. Additionally, many special needs individuals face secondary social issues like a higher risk of abuse, bullying, or social isolation due to difficulties communicating or reading body language and social cues. Lack of accessibility and accommodations can also pose problems. Some live with chronic health problems or require treatments like medications, therapies, and respite from round-the-clock care needs. The overall quality of life tends to be maximized when their unique profile is fully understood and compensated for through a customized support system.
5. What are the psychological effects of having a disabled child?
While the joy of parenthood remains the same, raising a special needs child also involves extra emotional work. Along with normal ups and downs, parents may experience acute grief over dreams broken, frustration at the lack of progress, worry about long-term impacts, and guilt over their own reactions at times. They shoulder immense responsibility yet have little control. Chronic stress is understandable yet unhealthy if not addressed. Seeking counseling, spirituality, and community ensures that parents also practice self-care. Despite difficulties, research shows bonded families of children with disabilities often display heightened compassion, patience, and personal growth compared to average parents as well.