A SPECIAL NEEDS TIMELINE
OF LEGAL ISSUES, RIGHTS, AND BEST PRACTICES
This timeline was prepared by AZ Lawyers Impacted by Autism, and we are grateful to Howard Sobelman of the firm of Snell & Wilmer for making this resource available to our readers.
I. Developmental Disabilities Overview
The Americans with Disabilities Act of 1990 (ADA) prohibits discrimination and ensures equal opportunity for persons with disabilities in education, employment, state and local government services, public accommodations, commercial facilities, and transportation. As soon as you know your child has been diagnosed with a DD you should:
- Have your child evaluated by a developmental pediatrician or a licensed clinical child psychologist or psychiatrist for medical diagnosis and to identify appropriate services, such as physical therapy, occupational therapy, speech and language therapy, classroom assistance, etc.
- Find appropriate healthcare and other treatment providers: “How To Make Your Health Insurance Work for You” azdisabilitylaw.org; www.azdes.gov/ddd
- Seek early intervention services through private insurance, AZ Early Intervention Program, DDD and your local school district.
- Apply for Social Security Disability benefits for your child, if appropriate http://www.ssa.gov/pubs/EN-05-10026.pdf
- Plan for your child’s care in the event of your death or incapacity
- Learn about Arizona Long Term Care (ALTCS) plans: azdes.gov/ddd and
“Arizona Long Term Care System” www.azdisability law.org
- Establish a Special Needs Trust (SNT) for your child
- Establish (and review yearly) an Estate Plan to identify a guardian who will watch over your child in your absence.
II. Education (0-3yrs)
Infants and toddlers through age 2 with potential disabilities may be entitled to services including an Individualized Family Service Plan (IFSP) under Part C of the Individuals with Disabilities Education Act (IDEA). http://idea.ed.gov/explore/view/p/,root,statute,I,C,; https://www.azdes.gov/azeip/
III. Education (Age 3 through high school graduation or age 22 whichever occurs first)
All children are entitled to Free and Appropriate Public Education (FAPE) in an environment that is the least restrictive possible. This means students with disabilities have a right to be educated with students without disabilities to the maximum extent appropriate. ADA Section 504 of the Rehabilitation Act of 1973 (Section 504), and the Individuals with Disabilities Education Act (IDEA) apply specifically to students with disabilities. Public schools, which include charter schools, must accommodate and provide services to students with disabilities; this is generally done by instituting an Individual Education Program (IEP) or a 504 Plan.
- Request an IEP or 504 Plan from your local school district, which is accomplished by requesting an evaluation in writing, as your child when your child is 2 yrs 9 months old. Your child may receive services through DDD, privately AND through an IEP.
- Your child does not have to be enrolled in school before the school district has an obligation under IDEA. Districts have an affirmative duty to find children who
are suspected of having a disability.
- IEP legal counsel or advocates can be hired to help with the process, or if the school does not comply with its legal responsibilities.
- Meet with teachers and administrators to ensure compliance with IEP/504 Plan. Progress reports should be given at least quarterly
- Attend and participate in annual IEP meetings to review child’s progress and create the IEP for the next year period.
- School District must evaluate your child every three years and determine eligibility for special education services
- If you disagree with the school’s evaluation, request an Independent Educational Evaluation
- Ensure that the IEP includes services for transition to further education, employment and independent living at least when the student turns 15.
- If parents want their child to be educated until the age of 22 in Arizona, as required by Arizona law, it is vitally important that they make certain their child’s IEP continues to show PROGRESS and the meeting and mastering of goals in the IEP. The school districts may try to “graduate” special needs students after their 18th birthday by arguing that the student has “plateaued.” Ensure the IEPs have realistic, achievable goals and that the child is always on track to master, or make progress, on at least two or three areas of his IEP.
IV. Life Care Planning/Special Needs Trust (Birth and throughout lifetime)
An Estate Plan includes information about who will be your child’s guardian when you die or become incapacitated. A Special Needs Trust is a critical part of the plan used to protect your child’s public benefits and provide for goods and services not otherwise available through public assistance alone.
- Establish a Special Needs Trust (SNT) for your child
- A Special Needs Trust can provide for your child’s needs beyond what public benefits can provide. For example, your Special Needs Trust can provide your child: Professional services – lawyers, accountants, advocates, Academic or recreational courses, Home décor and furnishings, Automobile/transportation costs.
- Inform all family members and others who may give gifts or inheritances to your child to direct those gifts and bequests directly into a Special Needs Trust, so your child’s public benefits are not impacted.
- Change all beneficiary designations for all retirement plans (401K and IRA) and all life insurance policies. The beneficiary designations should use the exact language of the Special Needs Trust and not the individual person as the beneficiary. Both retirement accounts and insurance policies are contracts and state the beneficiary in the contract.
- Arizona Long Term Care System (ALTCS) program is available for individuals disabled (65 or older, blind, or disabled) and need ongoing services at a nursing facility level of care, even if program participants do not reside in a nursing home. Many ALTCS participants live in their own homes or an assisted living facility and receive needed inhome services.
- Identify a guardian who will watch over your child in your absence (see below).
V. Employee Rights (Age 16+)
- Review and understand how your child’s work income will impact Social Security Income and other benefits.
- Analyze whether your child should open a 529 ABLE account.
- Review your child’s employment rights under the Americans with Disability Act (ADA) for accommodation from covered Employers (not all employers must comply).
- Report discrimination to the Equal Employment Opportunity Commission (EEOC).
VI. Guardianship/Conservatorship (As early as birth and throughout lifetime)
Guardianships and conservatorships are court orders that grant a person the legal right to make decisions for another person; usually they are granted to a person who is caring for a child who is not their own, or for an adult with a qualifying disability (the child or adult subject to the guardianship is called the ward).
- Guardianship allows the guardian to make decisions for the ward that are in the ward’s best interests, like appropriate housing, education, and medical care
- Conservatorship allows the guardian to make financial decisions for the ward that are in the ward’s best interests, like appropriate payment of expenses, management of funds at financial institutions, and management of public assistance benefits.
- Persons caring for children transitioning to adulthood should apply for guardianship, if there is a qualifying disability, when the child is 17.5 years old.
- File and request a deferral of the fees and costs of your Probate. This can save upwards of $700.00 in court costs when the judge rules favorably.
- Free legal forms are available in some Arizona counties.
- Yearly reports must be filed with the Court.
- For older parents, consider including an adult typical sibling or similar peer when petitioning for guardianship. If something happens to the parents, the sibling will not have to repeat the lengthy court process.
VII. Social Security Benefits for Children with Disabilities (0-18)
The federal government provides monetary benefits and medical care coverage to some children with disabilities. Some children may receive Social Security Income (SSI) and a few children may receive Social Security Disability Income (SSDI).
- Review Social Security’s website and consider whether you should apply on behalf of your child. Consider your household’s resources and whether your child’s disability is severe enough to qualify.
- Very few children under the age of 18 can qualify for SSI benefits because the income and resources of the parents must be very low.
- Talk to your child’s doctors about whether you intend to apply for SSI. It is important to put your doctors on notice that you are going to apply because their medical records will be reviewed by Social Security.
- If SSI is granted, Social Security will analyze your child’s disability every three (3) years to determine if SSI should continue.
- If SSI is denied, consider whether an appeal is necessary.
VIII. Social Security Benefits for Adults with Disabilities (18 Years+)
The federal government provides monetary benefits and medical care coverage to adults with disabilities, if they have severe functional limitations. Some adults will receive SSI and a few will receive SSDI.
- An appointment should be set up with Social Security 1-2 weeks before the disabled child’s 18th birthday. The timing is critical so that the individual applying for benefits does not fall under the program for SSI payments as a “CHILD” but as an “ADULT.” This needs to be stated when contacting SSI for an appointment.
- Social Security does not count the income and resources of family members when deciding whether the disabled adult meets the financial limits for SSI.
- SSI is also very important because the applicant also qualifies for medical care coverage under SSI. While the parent is working, this can be secondary coverage. When the parent retires, and no longer has private insurance, this can provide critical medical coverage for the individual.
- Fill Out Confirming Statement for Room and Board Payment before attending meeting
- Parent Will Provide Room and Board for Adult Child In Exchange for Rent of $723 per month
- When asked, “How is your child going to pay you for the first two months of rent because your child is not going to have income yet?” The parent should answer that they have entered into an agreement with their child to loan them the money for the first two months of rent and that the child has agreed to pay the parent back after the child starts receiving income from SSI.
- When a parent takes his or her Social Security benefit, their disabled child can disclaim their current benefit ($700.00) and claim 50% of the parent’s benefit. In some cases, this can be a significantly larger benefit.
- Attend meeting (guardian and child should attend) and bring: original birth certificate, social security card, photo identification, letter from doctor and medical records.
- For our kids who will never drive, they need to obtain an identification card from the State of Arizona for benefits, and for a multitude of services (medical visits, banking, shopping, check cashing).
- Prepare a one-page bullet point list to explain child’s disability and why the child cannot work (e.g., Cannot comprehend or follow a schedule, Cannot engage in daily life skills without assistance, Cannot manage money/understand the concept of money)
- If SSI is denied, consider whether an appeal is necessary
- Ensure child has continuing health care benefits – AHCCCS, private independent insurance policy, or covered on parents’ policy (until age 26)
- Consider transition planning, including Independent or group supported living housing, Post-high school vocational or other skills training/therapy, Case management
- Complete all yearly tasks required by court to maintain guardianship
- Complete all tasks required by Social Security to maintain child’s SSI benefits
NOTE: This document was created by a group of volunteer Arizona Lawyers that are impacted by Autism. The document is for the benefit of the entire Autism community and we encourage free distribution to all. The document is not intended to provide personalized legal advice, and does not represent the opinions of any firm or attorney. A qualified attorney or advocate should be consulted when pursuing these items.