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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 help?
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 anniversary.
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 provider selection.
I find this all rather complicated, is there someone who could answer my questions and help me better understand these options?
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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