Paving the transition path to help families find hope and practical advice

Action Steps to 22 - A Preparation Timeline

Why Do We Need to Think About the Timeline?

Believe it or not, we already do but we need to think about it a step further when our child is diagnosed with special needs. Every situation is different so for more individualized information you can email me at

Why is this important? Education is the key especially in the early years. How your child is evaluated through the educational system will be a pre-requisite to the supports they receive throughout their education.
It is so important to think long term about the LEGAL, FINANCIAL AND GOVERNMENT BENEFITS. We think about saving for College, vacations or special events in our lives. We need to think about the extra money we many need to help our individual with disabilities. Do we totally want to rely on Government Benefits…think about it and understand it is important to plan, educate and save for the future.


Develop IEP - Individual Education Plan

Why do you want to have this done at age 3? Sometimes these assessments can be done as early as 2 years of age. This assessment is helpful in determining the strengths and weakness in your child’s cognitive development. This assessment will determine whether your child needs early intervention. Early intervention is crucial in your child’s development. When your child turns 5 the school district will have helpful documentation to help place your child in an appropriate school environment. This is the beginning of a journey and it’s an important one.

Develop Transitional Plan / Think

Why is this so important? When your child is diagnosed with special needs in most cases this is a life long situation. Most families don’t realize that at age 22 the services they get through the school system are no longer an entitlement. Families must think “LONG TERM”. These are some questions you need to be asking the educators that are involved with your child’s care: What programs or Day services will be available at 22? Are there programs or agencies that I need to explore before they reach 22? If I chose to have my child live at home how can I get Day Services / respite care. I would like my child to work in the community so who do I contact? I would like some information on various living situations (i.e. group homes/ shared living) at what age do we apply for SSI and Guardianship?

What is the difference between a Group Home and Shared Living?

Group Homes – These are regular houses in communities that are staffed by a vendor/agency. Staffing is 24 hours a day with 3 separate shifts. Day/evening/night. In most cases there are between 4-5 individuals living in a house with appropriate ratio of staff. Each individual has their own room and in most cases the families supplies their individual with furniture for that room. Family involvement can create a room filled with pictures of the family and gear it to the needs of that individual.

**I have often been asked if a Group Home is like an institution. IT IS NOT AN INSTITUTIONAL SETTING…It is a regular home and in my case my son who has Autism has created independence and friendships with the other individuals in the house and with the Staff**

Shared Living - Can be an arrangement in which an individual, couple or family shares their home with a person with a disability. The providers of this service are referred to as Shared Living Providers. The Shared Living Provider supports the person’s daily needs. This arrangement can either be in a house or an apartment. States usually limit the number of people with disabilities to two but in some states it can go as high as 4. Individuals with disabilities that live in Shared living work volunteer or are involved in their community. Health, safety and the quality of care are as important in Shared Living as they are in any other setting (i.e. group homes, foster care). Most States administer shared living programs through another entity – County/Region/Provider Agency.

Applying for Guardianship is very important this gives the family the rights to continue decision making for their individual with disabilities. 



Apply for SSI / Guardianship


Families need to contact their State Agency to file a petition for Guardianship. There is a link on my Website to DDS in Massachusetts. If you click on that link and type in under (search) filing for guardianship it will give you a detailed explanation of Guardianship. State Agencies whether in Massachusetts or any other state have websites that contain this information. Families can petition and apply on their own or use an Attorney for this process.

Once your child turns 18 they are considered adults. If they are unable to make choices and be on their own it is very important that a family member or members apply for Guardianship which allows them to be a “Representative Payee” for their SSI money they are entitled to from the government. SSI money is their Social Security insurance money they are entitled to due to their disability. A guardian is defined as “person or agency appointed by a court to act on the individuals behalf”.


 Finalize Residence / Employment

Education is no longer and entitlement. SSI – Supplement Security Income – this is paid directly to recipients who qualify. Who qualifies - Individuals who documented cognitive or physical disabilities’. Individuals must be disabled and have a limited income with a MAX asset of $2000.00. Monthly checks can be used for Room and Board and other operating expenses. Having SSI creates eligibility for Medicaid.



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