Transition to Adulthood - an Overview

All children gradually transition into adulthood. When a child has specialized needs, it is wise to plan for this transition ahead of time, to ensure a smooth and successful process

There are many aspects to transition:

• Living arrangements

• Transition from pediatric to adult healthcare providers

• Education and employment

• Legal decision-making

• Self advocacy

Where will my son/daughter live?

How does the Regional Center support with Independent Living?

 Supported Living Skills (SLS) vs. Independent Living Skills (ILS)

• Supported Living Services (SLS): Provides services to someone living in their own home (not with their parents/guardians). Services can include up to be 24/7 care. Note that regional centers do not help pay for rent. 

• Independent Living Skills (ILS): Provides services of teaching skills to live independently, less intensive care than SLS and more individualized. 

Health Insurance

Transition to Adult Healthcare Providers

Children's Hospital of Philadelphia Transition Toolkit

The Children's Hospital of Philadelphia has developed wonderful worksheets that address various aspects of transition. You can access them all here: 

https://www.chop.edu/services/trisomy-21-toolkit-transitioning-adult-medical-care 

Legal Decision Making

Introduction:

Legal decision making is an important piece of transition. There are many options to continue to be involved in your young person's life, and knowing your options is crucial to supporting your young person's rights 

It is important to know that California passed a Next of Kin law https://leginfo.legislature.ca.gov/faces/billCompareClient.xhtml?bill_id=202120220AB2338&showamends=false. If your young person states that they want you to make decisions for them, or can't express themselves, you can continue to make decisions on their behalf without a conservatorship

Other options that keep your child and you in control for healthcare are:

1. HIPAA release form

2. Authorized Representative for dealing with insurance and paperwork

3. Power of Attorney and/or Advance Directives

4. Supported Decision Making agreements (there is new legislation that defines that, AB1662)

5. If someone is a regional center client with no paperwork, the designee of the Regional Center ED can sign consents. The RC is required by law to defer to parents or family if they are involved.

6. Do nothing and rely on the Next of Kin law—you may have some trouble accessing medical records or dealing with people over the phone without some paperwork.

Other options that keep you and your child in control for finances are:

1. Representative Payee for Social Security/Bank account

2. Authorized Representative for CalAble Account

3. Joint account (risks to this though so understand it because if the amount of money is >$2000 is could impact public benefits)

4. Special Needs Trust (first party, second party, pooled)

5. Debit cards that have features where you can limit the amount of money loaded, where it can be used or the types of purchases.

Supported Decision Making (SDM): 

What is SDM? 

• A less restrictive alternative than conservatorship 

• Helps people with disabilities make their own decisions about big and small aspects of their lives with people they trust 

• Very informal as SDM is not based on a binding contract; it is not notarized 

• Participant with disabilities retain their legal rights 

Why SDM? 

• Participants with disabilities retain their legal rights, as SDM is less restrictive than conservatorship

• Empowers people with disabilities to make their own decisions

SDM and Person-Centered Planning:

• People with disabilities decide who helps them make decisions

• During the regional center planning process, people with disabilities have the right to exclude people from the planning process as well as have the first and final say in the services they want / think would be most beneficial for them 

More info below:

http://www.supporteddecisionmaking.org/

https://www.aclu.org/issues/disability-rights/integration-and-autonomy-people-disabilities/supported-decision-making

http://supporteddecisions.org/about-sdm/

Power of Attorney

 This is an alternative to conservatorship for decision making support allows someone to choose who can assist them with healthcare, finances, etc. if they cannot make such decisions for themselves. A person can use this to get decision making support at anytime, but they can also revoke it. Just needs to be notarized (usually $15 at a UPS store). 

Conservatorship:

Limited Conservatorship for Persons with Developmental Disabilities

Credit: this information is adapted from resources by the Dale Law Firm

What is a Limited Conservatorship?

A limited conservatorship is a court proceeding whereby an individual or agency is appointed to be responsible for a developmentally disabled adult. These conservatorships are “limited” because the developmentally disabled adult retains the power to care for her or himself and/or manage her or his financial resources to the extent that the court finds that he or she is able to do so. The limited conservator cares for and controls those aspects of daily life that he court finds the developmentally disabled adult cannot competently handle.  It is important to know that a conservatorship strips the person of their decision making rights, and places them in the hand of a judge, who can then appoint a conservator

Does every person with a developmental disability need a limited conservatorship?

NO!! A limited conservatorship is not required merely because a person has a developmental disability. 

What alternatives are there to a limited conservatorship?

See above. There are many

When can conservatorship proceedings begin? 

If the proposed conservatee is a minor, the petition may be filed so that the conservatorship may be effective immediately upon the child turning 18

Who can establish a Limited Conservatorship?

• A petition for the appointment of a conservator may be filed by:

• The proposed conservatee

• The spouse of the proposed conservatee

• A relative of the proposed conservatee

• Any interest public officer or employee of an interested public agency of California

• Any other interested person or friend of the proposed conservatee

What are the duties of a Limited Conservator?

The limited conservator is responsible for the limited conservatee’s treatment, training, education, medical and psychological services, and social and vocational opportunities as appropriate and assists the limited conservatee in the development of maximum self-reliance and independence. 

What powers may the Conservator request?

A limited conservatorship can do any combination of these, as determined by the Court:

• Determine the residence of the conservatee

• Access to confidential records

• Control right to marry 

• Control the right to contract 

• Consent for medical treatment 

• Control social and sexual contacts 

• Make educational decisions 

A conservator cannot: 

• Control the conservatee’s wages from a job or salary

• Approve harmful medical treatment 

• Force medication therapy 

• Have the conservatee sterilized 

• Have the conservatee committed to an institution 

• Agree to electro-convulsive shock therapy

• Agree to psychotherapy

• Have any other powers not specified by the court 

A conservatee keeps the rights to: 

• Control their own wages/salary

• Make or change a will to say who gets their personal items when they die 

• Receive personal mail

• Vote, unless the judge takes away that right

• Be represented by an attorney 

• Ask for a new conservator 

• Ask for the conservatorship to end

Who can be appointed a conservator: 

• A person 18 years or older and who will act in the conservatee’s best interests 

• Judge may appoint more than one conservator (co-conservator)

• A conservator must give other people an official copy of the Letters of Conservatorship in order to be recognized as a conservatee’s conservator (ie. Letters of Conservatorship must be given to doctors, financial people, etc. or else the conservator’s position may be disregarded). 

How to obtain conservatorship:

1. A proposed conservator files a petition with the court.*

2. Copies of the petition are sent to the intended conservatee and to the regional center.

3. The regional center will assess the conservatee and determine the degree of disability and ultimately recommend the appropriate rights to take away from the intended conservatee.

4. A court investigator is assigned to the case, and they must explain and review the petition to the conservatee and determine whether the conservatee wants to challenge the conservatorship.

5. Intended conservator must go to the hearing, unless judge appoints an exception. A judge will appoint the conservator an attorney. 

6. The court process concludes with the judge deciding whether or not an individual can care for their own needs. The court may or may not appoint a person as the conservator. 

*The petition that the intended conservator must file with the court is tedious. Although intended conservators can go through the legal proceedings on their own, some opt to pay for legal help and representation. 

What to do if there is a disagreement between conservator/conservatee, or if a conservatee wants to end a conservatorship:  

• It is INCREDIBLY DIFFICULT to reverse conservatorships. This is why it is important to consider all other options

• Support from an attorney, from your department of developmental services case manager, and your loved one's work or day program will likely be required

• Requires a court hearing