Frequently Asked Questions by families interested in services from the Pennsylvania Mental Retardation System
- What kind of services are available?
- There is a full and comprehensive range of services
available in Pennsylvania including; in home support, apartment living,
group living, family living, respite, vocational, transportation, physical
and speech therapy, family support, planning and service coordination.
Almost anything that is necessary to meet persons need is now possible.
For more information click here.
- How are these services paid for?
- Most mental retardation services are provided
as part of Federal Medicaid Waivers. People with mental retardation,
both children and adults are usually eligible for these services. Typically
there is no cost to the family or the individual. In Pennsylvania the
Legislature provides over $1,600,000,000 in funding for these services.
The exception is that a person receiving residential services may pay
for their room and board out of their Social Security income.
- Is there funding for families
who have been caring for a son or daughter at home and who need some
- Yes, the Pennsylvania Legislature has committed
about $50,000,000 a year in increased funding for services to persons
who have been living at home and need additional support. This is described
as the Waiting List Initiative. For more information click here.
- What is Self Determination?
- This is a national movement that advocates for
people receiving services and their families having more control of
planning their services and selecting the organization that will provide
their services. For more information click here.
- What is Transformation?
- This is the policy direction of the Pennsylvania
Office of Mental Retardation that is changing the very structure of
mental retardation services in Pennsylvania. This process is committed
to providing individuals receiving services and their families with
more choice, individualized budgets, self determination and the right
to select the community organizations that will provide their services.
For more information click here.
- What in the world is an ISP?
- This is an Individualized Service Plan. The ISP is a very important
core document that establishes the need and a plan for a person
with mental retardation in Pennsylvania. For people that are enrolled
in the HCBS Waiver the ISP establishes the services the State is obligated
to provide and in effect established what the individual is entitled
to. The ISP is a collaborative effort and is developed by the individual,
their family, their service coordinator and other people who know and
care about the person being supported.
- I hear that Waiver Services are an
entitlement, what does that mean?
- As a result of the Olmstead Court Decision and the Olmstead
Letter #4 issued by the Center for Medicaid Services previously
HCFA, people enrolled in the Home and Community Based Services Waiver
(HCBS) are legally entitled to have all of their needs met. This is
a new and very important right particularly for people that will need
supports throughout their life. Many people also believe that once enrolled
in the Waiver a person will have a life time entitlement. People who
are not enrolled in the HCBS Waiver regardless of need may not have
any entitlement to services. People enrolled in the Person and Family
Driven Waiver have an entitlement to services up to a limit of $21,700
annually. The HCBS Waiver has no limit, however each person may have
a limit determined by their EIR or Estimated Individual Resources calculation.
- I want my son or daughter to continue
living with me, but I need more help. What is available?
- First, it is wise to develop an individualized plan identifying
what you need. You will find that there is quite a wonderful range of
individualized options and supports that are available. This could include
in home help a few hours a week up to several hours a day. In home medical
and therapy services are also available as well as respite that would
allow you to be out doing errands or having time to your self.
- I want to keep my son at home with
me as long as I can, however my husband and I are starting to have some
health problems, can we also get some help?
- Yes, increasingly there are Medicaid Waiver services for the general
public who need help so they can remain living at home. We see this
a a family preservation mission and are working to integrate support
services so all members of a family can stay at home as long as possible.
We are also able to provide a comprehensive array of supports and services
to parents that can be funded directly by the family.
- I worry about what will happen to my
son when I'm no longer able to care for him?
- It is possible to work out a plan for how you would want your son
supported and cared for when you are no longer able to do so. This plan
would be highly individualized and could draw on the full range of services
and support options available. Working this out now can give you and
your son the assurance and comfort that this important planning is done
and that he will be well cared for.
- I have taken care of my daughter for
45 years. I think it would be good for her and for me for her to live
in her own home. Is that possible?
- Yes, dependant on her need and preference she could be supported
in an apartment, in a family living setting or a group home. Some families
find it beneficial to establish the community support services for a
son or daughter while they can play an active and influential role in
the design and direction of the supports.
- I am planning to move into a retirement
community and would like to make my home available for my son and two
other persons to live in. Is that possible?
- Yes, You can set the home up as a household for the three people.
You would be able to select a community provider organization that would
run the home including staffing and program services. The home can be
gifted to the agency that will be providing the services or you could
place it in a Medicaid eligible trust.
- Our family and two other families would
like to buy a home for our three children to live in, is that possible?
- Yes we have done this in several instances and it has worked out
very well. The three families would be able to select the agency that
would provide staffing and services in the home.
- I am interested in my son being in
a home that operates on Christian values, is that possible?
- Yes, consistent with his individual service plan and his preferences,
issues of faith and religions practice can be an integral part of his
home life including; prayer, bible study and support for participation
in his church.
- I am interested in my daughter living
in a home that will support her in her Jewish faith including observing
kashrut, is that possible?
- Yes, we have a home and several apartments that incorporate Jewish
cultural, religious and dietary observances as part of the daily life
of the home. One of our homes was developed in partnership with the
United Jewish Community of Harrisburg and recently celebrated its tenth
- Several families are interested in
starting an agency to serve our children, is that possible?
- Yes, new agencies are strongly encouraged. They will need to meet
licensing and invitation to qualify requirements of the mental retardation
system. Keystone at times has partnered with families to start a new
agency, Keystone Human Services Mid Atlantic is an example of such a partnership.
- As part of my estate planning, I am
interested in setting up a trust for my daughter, is this a good idea?
- Yes, however it is important that it be a supplemental trust that
is Medicaid eligible. It is very important that the trust not disqualify
your daughter from being eligible for Medicaid funded services. Such
trusts need to be set up by an attorney expert in estate planning and
Medicaid eligibility. Keystone is developing a Medicaid eligible supplemental
trust called the Keystone Master Trust.
- Can you suggest things a family should
consider when selecting an agency to provide services to a family member?
- Yes, visiting the agency and its services is very important, as
well as reputation, financial strength, values, leadership and
governance. We have developed a suggested set of qualities that a family
might want to consider when selecting an agency to provide services.
These qualities can be accessed by clicking here.
- I am interested in using services in
a county that is adjacent to the county where I live, is that possible?
- Yes, the waivers are state wide and an individual or family has
a right to receive services in any county they choose. The services
would be purchased at the rate that applies to the county where the
services are delivered and the selected agency would have to arrange
a contract with the home county that would be funding the service.
- I am interested in using a consultant
or advocate to work directly with me, helping to develop a plan that
will really meet my sons needs. Is that possible?
- Yes, the Waivers provide a service that is called "Personal
Supports Coordinator". This person would be selected by the family
and would serve as a consultant and advocate during the ISP process.
They could also assist you in evaluating agencies and making the final
- I find this all rather complicated,
is there someone who could answer my questions and help me better understand
- Yes, we would be very pleased to have someone meet with you. There
is no charge for this service. For contact information on mental retardation
services click here.
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