Families’ Responsibilities in the Partnership
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When families partner with Lanterman and become active and informed participants, they are better able to access the resources, services and supports necessary to achieve their desired outcomes.
Gather Information
We’ve all heard, “Knowledge is Power,” and having accurate, timely information helps families make better choices and decisions. There are many ways for families to become better informed:
- Utilize the Koch-Young Resource Center.
- Participate in parent groups, training opportunities and workshops provided by Lanterman and other community organizations.
- Network with other Lanterman families.
- Learn more about the Lanterman community by signing up for our e-mail newsletter, following us on Facebook and Instagram and using our Network of Care.
Be Prepared and Actively Participate
Families have a leadership role in planning, and responsibilities of that role include:
- Establishing and maintaining an effective working relationship with your service coordinator. You can do this by:
- Communicating your needs and concerns.
- Helping your service coordinator complete the Client Development Evaluation Report (CDER) and health status review annually.
- Reviewing the quality and effectiveness of the services and supports your family member receives.
- Sharing both good and bad experiences, including problems that arise and services and supports with which you have been satisfied.
- Working together to identify and develop a circle of support.
- Preparing for meetings by researching options and collecting information.
- Thinking about goals, plans, and services and supports that you would like to discuss at the meeting.
- Partnering with the professionals providing services and learning your role in helping your child build skills at home and in the community.
- Asking questions when something is not clear.
- Keeping accurate records.
- Following up on the items for which you have responsibility.
- Understanding the benefits and outcomes that may come with the choices and decisions you make.
Seek Out Support
Remember that you are not alone. Many other parents of special needs children share your experiences and feelings. Here are some tips and suggestions that we have gathered from some of our Lanterman families:
- Never give up hope.
- Seek out peer support from other families who have “been there.”
- Identify your own natural support system – family, friends, religious organizations, community.
- Join a support group that meets your needs.
- Take time for yourself.
- Keep your expectations high and set challenging, yet realistic, goals for your child.
Be Actively Involved in the Lanterman Community
There are many opportunities to get involved and actively partner with Lanterman Regional Center:
- Become a support group facilitator or a Peer Support Partner.
- Seek out opportunities to partner with Lanterman in the development of plans, policies, legislation and strategies for service delivery.
- Participate in regional center work groups, committees and possibly the board of directors.
- Become an advocate for your family by calling, visiting and writing legislators and government officials on the local, state and federal levels to inform these leaders about issues important to our community.
FAQ
Get Answers
Why is it important for my service coordinator to visit me in my home?
It is important for service coordinators to visit individuals and their families in their homes rather than another more public setting. Many of the issues discussed at a meeting are personal and private and it is difficult to maintain a desired level of privacy and confidentiality when these matters are discussed in a setting such as a coffee shop or restaurant. Additionally, it is essential for service coordinators to be familiar with an individual’s home situation so they can make the appropriate recommendations, especially in regards to in-home supports. The more they understand and know about you and your family, the better they are able to support you.
What is a Circle of Support?
According to the Lanterman Act: “Circle of support means a committed group of community members, who may include family members, meeting regularly with an individual with developmental disabilities in order to share experiences, promote autonomy and community involvement, and assist the individual in establishing and maintaining natural supports. A circle of support generally includes a plurality of members who neither provide nor receive services or supports for persons with developmental disabilities and who do not receive payment for participation in the circle of support.” [Section 4512 (f)]
In other words, a circle of support is a group of people who play an important role in the life of an individual by providing support in different ways during their day-to-day interactions with that person. Anyone that plays a supportive role in the person’s life is part of his or her circle of support. This could be a family member, a neighbor, or a school or work friend.
Where else can I find support within the Lanterman Community?
Families have told us over the years that one of the most important things they learn at the Regional Center is that they are not alone – that other parents of children with special needs share their experiences and feelings. Here are some things that parents have told us that have been particularly helpful to them:
- Seek out peer support from other families who have “been there” by joining a support group or requesting a Peer Support Partner.
- Identify and make use of your own natural support system – family, friends, religious organizations, community.
- Keep your expectations high and set challenging, yet realistic, goals.
What should I include in my Lanterman Regional Center home file?
- Basic information about you or your family member, such as special needs or medical conditions, so that others can provide consistent care.
- A list with contact information of all the people, agencies, programs and organizations that are providing services to you or your family member.
- A copy of the current Individual Program Plan and, if applicable, Individualized Education Program.
- Copies of reports from independent assessments.
- Copies of all written communication (including handwritten) to and from all professionals working with you or your family member.
- A list of medications being taken at home, school or work as authorized by the physician. Include the medication name, dosage, time of day taken, and the prescription number and pharmacy. Also note changes in dosage and reactions to the change that you have observed.
- Your notes (dated) about meetings or phone conversations with regional center staff, physicians and other professionals working with you or your family member. Also, be sure to include the name of the person with whom you spoke or met.
How should I organize my records?
It is helpful to divide records into subcategories, such as health, education and IPP, and organize them by date with the most recent on top.
It also helps to maintain a notebook containing copies of your most recent records that you can take with you to meetings and appointments. This notebook should include, at a minimum, two years of reports, evaluations and program plans.
What happens if the individual receiving services moves out of Lanterman’s area?
If you or your family moves from Lanterman’s service area to another location in California, services and supports will be provided by the regional center that serves your new geographic area. Lanterman will transfer records to the new regional center. According to the Lanterman Act: “Whenever [an individual] transfers from one regional center catchment area to another, the level and types of services and supports specified in the [individual’s IFSP/IPP] shall be authorized and secured, if available, pending the development of a new [IPP/IFSP] for the [individual]. If these services and supports do not exist, the regional center shall convene a meeting to develop a new [IPP/IFSP] within 30 days. Prior to approval of the new [IPP/IFSP], the regional center shall provide alternative services and supports that best meet the individual program plan objectives in the least restrictive setting.” [Section 4643.5 (c)]
If your family moves out of California, your service coordinator and the Koch-Young Resource Center can help you contact the appropriate developmental services agency and locate related resources in the new state. With your written consent, the Regional Center can also transfer your records to that state’s agency.
Can a person lose his/her eligibility for services?
The Lanterman Act states that a person “who is determined by any regional center to have a developmental disability shall remain eligible for services from regional centers, unless a regional center, following a comprehensive reassessment, concludes that the original determination that the individual has a developmental disability is clearly erroneous.” [Section 4643.5(b)]
What should I do if I do not know my service coordinator’s name?
If you do not know the name of your service coordinator, call the Regional Center at 213.383.1300 and ask the operator to transfer you to the secretary for the unit that is supporting you. If you don’t know the unit, let the operator know the client’s age and what city he or she lives in, and the operator will transfer you to the appropriate unit. Lanterman takes our responsibility to protect the privacy of our clients and their families very seriously, and you may be asked questions to confirm your identity.