Know Your Rights Guide: Chapter 6 - Youth with Disabilities

Jennifer Pokempner,

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Youth with disabilities have the same hopes and dreams that all youth do, but may face additional barriers to success, especially if they are in the foster care system.  There are many laws and programs that can help young people with disabilities make a successful transition to adulthood.  This chapter provides information on the laws that prohibit discrimination or bad treatment of individuals with disabilities, laws and programs that support educational success, and how to access Supplemental Security Income (SSI) as part of your plan for a successful transition to adulthood.   

I. Basic Rights/Protections for Individuals with Disabilities

Are youth with disabilities in foster care protected from discrimination?

What are my rights under the laws that protect me from disability discrimination? 

Under these federal laws, child welfare agencies and organizations or programs that receive federal money are not allowed to exclude a young person from participating in a program or receiving services because they have a disability.4 This means that, if you have a disability:

  • The child welfare agency has to offer you the same services as everybody else, including transition to adulthood services and permanency services.
  • If your disability makes it hard for you participate in a program or service, the agency must make “reasonable accommodations” or “reasonable program modifications” to help you participate. This means the agency may have to change some parts of the program or give you some additional services or support to help you participate.
  • The child welfare agency has to offer you services in “the most integrated setting” that can meet your needs.5 This means that you cannot be placed in a group home or an institution just because you have a disability. The agency can only place you in an institution if your health needs cannot be met in a family-based placement. 

What should I do if I have been discriminated against because of a disability?

There are several things you can do if you have been mistreated, treated unfairly, or are unable to access a program or service because of a disability:

  • Discuss it at a case planning meeting.  Your case plan is a place where your needs are written down and services and supports to meet your needs and goals are also identified.  If you feel that your disability needs are not being addressed, your case plan should be changed to include these issues.  
  • Tell your lawyer.  Your lawyer can help advocate for you to the child welfare agency or program/service provider and can raise the issue in court. For more information about working with your lawyer, see Chapter 18.
  • Tell your judge in court.  The judge needs to enforce the laws that protect you from discrimination.  At your permanency reviews, the judge must also ask about any disability needs you have and make sure plans are in place to address those needs.6  
  • File a grievance. If you face discrimination from an institution or a provider, raise that issue in a formal grievance. For more information on how and when to file a grievance, see Chapter 17.
  • Call Disability Rights Pennsylvania (DRP). DRP is the “Protection and Advocacy” (P&A) organization in Pennsylvania. Each state is required under federal law to have a P&A to help advocate for and protect the rights of people with disabilities. They can explain the different ways you may be able to get help and fight for your rights.  You can contact DRP at 1-800-692-7443 or through  their online intake form, available here:

Will my disability affect my placement options?

  • Youth with disabilities have all the same placement options as their peers, and just like their peers they are entitled to be placed in the least restrictive, most family-like placement that can meet their needs.7
  • Youth with disabilities are also required under federal disability law to be provided services in “the most integrated setting” possible. “Most integrated” means the placement that offers the most contact with family, non-disabled peers, and the community. Here are some possible community-based placement options for youth in foster care who have disabilities:
    1. Family Foster Care or Kinship Care: Youth with disabilities can be placed in family foster homes, or with kin, just like their peers. If a foster parent or kinship placement needs additional training or support to be able to help you with your disability, they should ask your lawyer or caseworker for help accessing those services. 
    2. Medical Foster Care: Many counties offer Medical Foster Care programs, which are foster families with special training to help take care of youth with chronic medical conditions. 
    3. Therapeutic/Treatment Foster Care or Specialized Behavioral Health: Different counties use different names but most have special family foster care programs for youth with mental or behavioral health needs. Like with Medical Foster Care, these foster parents receive extra training and support to help them take care of youth with these conditions.
    4. Supervised Independent Living (SIL): SILs are living settings for youth age 18-21 and can be options for youth with disabilities too! Ask your caseworker or attorney about the options available in your county.
  • In any of your placements, you may need modifications to the standard services or facilities to accommodate your disability—things like wheelchair accessibility, additional training for resource parents, or transportation training. Ask if these modifications are possible and ask your lawyer to advocate for you if they are denied. For more information about placements, see Chapter 2.
  • Sometimes youth enter the system because their family has a hard time meeting their needs. If your family needs a service or support so that they can care for any special needs related to a disability, let your lawyer know so they can advocate that these services be put in place, including services and supports that would make reunification possible. 

What if I am placed in a Residential Treatment Facility (RTF), group home, or other institutional placement?

  • Children and youth deserve to live with family and in the community.  
  • It should be rare that you are placed in a group setting.  These placements are the most restrictive type of placement and all efforts should be made so you can be with a family or non-group setting.  
  • You should not be placed in group care just because you have a disability. 
  • Sometimes, youth with disabilities need treatment in a hospital or an RTF. Treatment is different than placement. Having a medical or behavioral health need that requires treatment in a facility does not mean that you must be placed in group care. Some young people need in-patient treatment for a limited time and then return to family-based placements.
  • If you are in a group care setting or you feel like your placement is not meeting your needs, talk to your caseworker and lawyer so you can think about other placement options.

Do I have a right to the medical or behavioral health services needed to help with my disability?

How can I make sure my disability and other health needs are met after I leave the foster care system?

II. Special Rights/Protections Related to Education

Do I have a right to any services or supports to help with my disability at school?

Who qualifies for special education services?  

What happens if I am eligible for special education services? 

  • If you are eligible for special education services, you will have an Individualized Education Plan (IEP) that describes the type of instruction you need and any other services that will allow you to receive a Free and Appropriate Public Education (FAPE). 
  • You should receive these services in the Least Restrictive Environment (LRE). This means that you should be placed in regular education classes to the greatest extent possible.
  • The services you receive should help you make progress and achieve your goals, including progressing with your peers, attending college or a trade school, and acquiring job skills to pursue a career.  
  • Make sure you participate in all IEP meetings.  That is where the decisions are made about what services and supports you will receive.  IEP meetings happen at least once per year, but you can ask for a meeting when you want to make a change in your IEP.   

What is a 504 Accommodations Plan?  

  • A 504 accommodations plan is a plan that includes steps that the school, college, program or organization needs to take to help an individual with a disability take part in the program or services provided.  It’s also called a “504 Plan,” “Service Plan,” or an “Accommodations Plan.”
  • A 504 Plan is different than an IEP for at least two reasons: 
  • A 504 plan can be developed in high school, college or most anywhere while an IEP only exists in high school. 
  • A 504 plan includes steps to take to remove barriers rather than specific services. 
  • The type of accommodations in a 504 Plan depend on the student’s needs and what will help them learn and be successful in the program. 

Who will come to my IEP meetings? 

  • Your parents should still come to your IEP meetings, even if you are in foster care.  They will continue to make decisions regarding special education if they are active and involved.
  • Your foster parent should attend IEP meetings, too. If your parents are not active and involved, your foster parent, a court-appointed Educational Decision Maker, or a “surrogate parent” appointed by a school district will make decisions about your educational services. 
  • If you are an unaccompanied youth experiencing homelessness, your school must appoint a surrogate parent. You can recommend who that person should be. 
  • You have the right to invite supportive adults in your life to participate in your IEP meetings. If there are other people who play a role in your life and education, you can invite them to attend the IEP meetings, and your school must allow them to participate.  
  • Your voice matters! Your educational decision maker should make decisions based on your input. 

What is the transition planning requirement in the IEP?  

What must be included in the transition plan in the IEP?  

  • The transition plan in the IEP includes activities that help you move from high school to college, job or career training, independent living, and work. 
  • Your transition plan must include goals related to:  
    • Post-secondary education or training, including a 2- to 4-year university, community college, technical school, or anything that furthers your education.  
    • Employment, including goals for getting a job and finding a career.  
    • Independent living, including getting around in the community, using community resources, and accomplishing daily tasks that an adult needs to live as independently as possible.  
    • Community participation, including participation in activities, clubs, and community events, such as church and cultural events.  
    • Adult service connections, including connecting with agencies and services that you will need as you become an adult. For example, this could include OVR or the Social Security Administration (SSA).  

What are some examples of goals that could be in the transition plan in my IEP? 

  • Your goals should be based on your interests and hopes for your future career and life skills. Take some time to think about your goals as an adult. Research and ask questions to figure out what you will need to do or to achieve those goals.
  • Use this tool to brainstorm some ideas for your transition plan. Examples of goals: 
    • Selecting and applying to 5 colleges.
    • Getting an internship in a career area that interests you while in school.
    • Maintaining a job. 
    • Learning money management and budgeting. 
    • Learning to use public transportation. 
    • Learning how to manage your health care needs.

Is the transition planning requirement in my IEP different than my transition to adulthood and discharge plans?  

  • While this plan will have goals that overlap with the transition to adulthood plan, and the discharge plan- the transition plan in the IEP is focused on the transition from school to work or to post-secondary education and training.

Who can help me advocate for a good transition plan in my IEP?

  • You will be your best advocate and should actively participate in all IEP meetings, including those about your transition plan. 
  • Tell the IEP Team your goals and what you want to do after graduation. It’s the team’s job to help you get there.  
  • Your education decision maker is required to be at these meetings and help you advocate for an excellent transition plan. Meet with that person before the IEP meeting to talk about what you want. 
  • Let the judge in your case know if you are not getting the special education services you need, including transition services in your IEP.  The judge can order that action be taken to help advocate for the services you need.  

What can I do if I need help getting my education needs met if I have a disability? 

III. Disability and SSI

What is Supplemental Security Income (SSI), and how can it help me? 

  • SSI is federal needs-based program for children and adults with very low income and resources who are disabled, blind, or age 65 or older.
  • Eligible individuals receive money each month. Depending on the individual’s income, a monthly SSI payment can be up to $800.
  • These payments can provide an important source of stability for youth transitioning out of the foster care system. SSI payments can be used for expenses, such as housing, and can be a path to other resources like Medicaid, food stamps, and supportive housing programs. 

Who is eligible for SSI?

  • There are two main parts to an SSI eligibility determination: disability and income. 
    1. Disability: You might meet the disability requirement if you:
      • Have a behavioral health condition, physical disability, and/or cognitive impairment; and
      • That disability makes it hard for you to do some tasks to meet your needs each day or to work if you are age 18 or older.
    2. Income: You may meet the income requirement if you have very low income. To be eligible for SSI, you also cannot have more than $2000 saved.  

      • Youth in foster care, even if they have very low income, often do not meet the income requirement for SSI eligibility while they are in care because federal foster care payments (the money the federal government pays for your foster placement and other expenses) count as “income” for SSI.

      • BUT, you might become eligible when you leave care, and the federal government lets youth in foster care apply for SSI before leaving care to ensure you can receive the money as soon as you are discharged. For more information about applying for SSI, see the next question.
    3. There are some additional eligibility requirements that also might apply, such as citizenship. See Chapter 13.
    4. Eligibility requirements are slightly different for children and for adults. If you were receiving SSI as a child, your eligibility will be “redetermined” when you turn 18. For more information on the “Age 18 Redetermination,” see “What You Need to Know About Your Supplemental Security Income (SSI) When You Turn 18.” 

What should I do if I think I may be eligible for SSI and want to apply? 

  • If you think you might be eligible for SSI, talk to your lawyer or caseworker and ask for more information about SSI eligibility and help to apply.

What is the process for applying for SSI for youth in foster care?

  • Applying for SSI is complicated, and you should begin preparing early and get help from your lawyer or caseworker.
  • Some youth might be eligible for SSI while they are in still in foster care, but many youth will not be able to receive SSI benefits until they leave care, because of the income eligibility requirement (see previous question). 

If I want to apply for SSI before I leave foster care, when should I apply? 

How do I apply for SSI? 

  • The SSI application process goes like this:
    • Find someone to help: The child welfare agency is responsible for assisting you with your SSI application while you are still in care. Ask your caseworker or attorney to help you with the process. 
    • Collect your materials: You will need all your medical records, plus lots of other documents, such as your IEP and any 504 Plans. 
    • Call SSA for an interview appointment: Once you have your documents ready (and are within 180 days of your discharge from foster care), call the SSA at 1-800-772-1213 to schedule an application interview. 
    • Mail or drop off application packet: Once you schedule your interview, you can mail or drop off your SSI application packet.
    • Attend the interview: Attend the interview appointment scheduled by SSA. 

Why is it important to apply for SSI before I leave care?

  • The eligibility determination process for SSI is more time-consuming and complicated than most people think. To prove your eligibility, you must present medical and other treatment records with your SSI application. It will be easier for you to work with your caseworker and lawyer to collect and submit those records while you are still in care.
  • If you leave care before you get a decision on your SSI application, make sure you contact the SSA and regularly provide them with your updated contact information so that you do not miss an important notice or call about your case.

If I receive SSI while I am in care, where does the money go? 

  • While you are still in care, the child welfare agency can use your SSI funds to pay for your care. They should also use some of the funds to meet any needs you have related to your disability and reserve some of the money to help you as you transition from care. 
  • Ask your attorney or caseworker these questions to ensure the SSI money is being used to help with your transition to adulthood:
    • Are there any SSI funds that could be used either for planning for my transition or for additional services?
    • Can some portion of the SSI payment be given to me so I can learn to make decisions about necessities, such as food or clothing?  
    • Is there a special program or activity that will address one of my needs that is not currently being met and will help me achieve my goals?
    • Can some portion of the SSI funds be set aside as an emancipation fund for when I transition from care? Note: this amount usually cannot exceed $2000 or you may become ineligible for SSI.   

Can I work while receiving SSI? 

  • Yes. Income is part of the SSI eligibility determination, but there are certain circumstances where money made from work may not count against an individual’s eligibility for SSI. For example, an individual who is under age 22 and is in school or a post-secondary education or training program can have a certain amount of their income from work excluded from being counted for the purposes of SSI eligibility.
  • There are also several programs that allow you to set aside money to use to implement a plan to enter or re-enter the work force or achieve self-sufficiency. This could include money to attend a vocational program or money for special tools or equipment to be used in a program or on the job. One of these programs is called a Plan for Achieving Self Support (PASS). The money set aside to spend on a training program, equipment, or other supports that is set out in the PASS would not be counted as income. To find out more about the work incentives that an individual receiving SSI may be eligible to receive, contact Disability Rights Pennsylvania at 1-800-692-7442. 

What is a “payee,” and can I be my own payee if I receive SSI?

  • The “payee” is the person designated to receive SSI money on behalf of a person who is receiving SSI benefits. The child welfare agency is the least preferred (last choice) option to be your payee21.  Often though, the child welfare agency does become the payee for youth in foster care who receive SSI.  
  • If you are under age 18, usually a payee will be appointed for you. An appropriate payee should have a relationship with you and have knowledge of your special needs, treatment, and services.
  • If you are over age 18, you are assumed to be able to manage your own funds and be your own payee. However, depending on your disability, in certain situations the SSA may ask that you have a payee appointed for you. If this happens, you can overcome this by getting documentation from a doctor or treatment professional that you can manage your own money. 

Will I receive SSI once I am out of care if I received it while in care?

  • Not necessarily. If you receive Supplemental Security Income (SSI) as a child (under age 18), you are not guaranteed to receive it as an adult when you leave care.
  • Each child who receives SSI must go through an “Age 18 Redetermination,” where the SSA reviews your medical and/or mental health treatment information to determine if you meet the criteria for adult eligibility for SSI payments. For more information on the “Age 18 Redetermination,” see “What You Need to Know About Your Supplemental Security Income (SSI) When You Turn 18.”
  • If you are involved in an approved vocational rehabilitation program, still in high school and with an Individualized Education Plan (IEP), or involved in another similar program approved by the SSA, you may be able to continue SSI eligibility (without meeting the adult criteria) at least until you have completed the approved program. This is sometimes referred to as continued payment under Section 301.   
  • If you receive SSI, it is important to be prepared for the Age 18 Redetermination process. Talk to your lawyer and caseworker as well as your school’s Transition or Special Education Coordinator and any other teacher or counselor who knows about the process.

Should keeping my SSI eligibility or applying for SSI be part of my transition/discharge plan if I have a disability? 


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